SINTEF REPORT TITLE

Living Conditions among People with Activity Limitations in Zambia. A National Representative Study.

AUTHOR(S)

Arne H Eide, ME Loeb (editors)

CLIENT(S)

SINTEF Health Research

Address : P.O.Box 124, Blindern, NO-0314 Oslo/

Telephone: +47 22 06 73 00

Fax:+47 22 06 79 09

Enter prise No.: NO 948 007 029 MVA

Norwegian Federation of Organisations of Disabled People

REPORT NO. CLASSIFICATION CLIENTS REF.

SINTEF A262 Unrestricted Jarl Ovesen CLASS. THIS PAGE ISBN PROJECT NO. NO. OF PAGES/APPENDICES

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Final Report for print_ed2 ME Loeb Karl-Gerhard Hem

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2006-09-11 Arne H Eide ABSTRACT

This research report provides results from the study on living conditions

among people with disabilities in Zambia. Comparisons are made between

individuals with and without disabilities and also between households with

and without a disabled family member.

Results obtained in Zambia are also compared to those obtained in earlier

studies carried out in Namibia, Zimbabwe and Malawi.

The Zambian study was undertaken in 2005-2006.

KEYWORDS ENGLISH NORWEGIAN

GROUP 1 People with disabilities GROUP 2 Living conditions SELECTED BY AUTHOR Activity limitations

ICF National study

2

This is a revised edition of the original Report on Living Conditions among People with Activity Limitations in Zambia published in September 2006.

Of particular note:

Pages 74/75: the presentation of prevalence data has been appended.

Table 5.28, page 130 has been revised. Numbers are the same, but percentages displayed are more in line with the interpretation of these data.

Pages 162/163: the discussion of disability prevalence has been revised.

A new Appendix 1 (referred to on page 27) and Appendix 2 (referred to on page 74), have been added (pages 181 and 183). Other appendices appear in the same order as previously.

3

PREFACE

(Alexander M. Phiri – Director General, SAFOD)

The Southern Africa Federation of the Disabled (SAFOD) is

happy to be part of the study on the Living Conditions among

People with Activity Limitations in Zambia. It was indeed a

pleasure to work with a wide range of dedicated stakeholders on

this study, notably our main partner FFO (Norwegian Federation

of Organizations of Disabled People), Zambia Federation of the

Disabled (ZAFOD), Institute for Economic and Social Research

(INESOR) and Central Statistical Office (CSO) in Zambia, the

Zambian Government through the Ministry responsible for

people with disabilities, and the specialized Norwegian

institution that was tasked with the responsibility to conduct the

study, SINTEF Health Research.

Over the last few years similar studies have been carried out in

Zimbabwe, Malawi, and Namibia, and during that time there

have been significant changes in both the philosophy and

practice of conducting research with a focus on disability.

Increasingly, our Norwegian partners have been leading the way

in terms of placing emphasis on ensuring the active participation

4

of people with disabilities in carrying out research work. Such

shifts and changes in the approach to research have, with no

doubt, resulted in a number of challenges as well as

opportunities; but on the whole the approach has been

empowering the usually marginalized groups. It is hoped that

with more such studies, not only in Southern African, but in the

whole of Africa, people with disabilities will enjoy and experience

the kind of liberation they have never had before. Data on the

living conditions of people with disabilities is very important not

only as a lobbying tool for the disability movement but as an

important guide to governments, development agencies and

other stakeholders that have an interest to improve the services

they provide to people with disabilities. My dream as the

Director General of SAFOD is to have studies and data on the

Living Conditions in all SAFOD member countries, i.e. from

Zambia we should move to the next country, and the next, and

the next, until we cover all the remaining six countries. I am

sure our Norwegian partners will continue to support us!

5

Table of Contents

PREFACE ............................................................................ 3

Table of Contents................................................................. 5

Summary ........................................................................... 9

Introduction.......................................................................21

1 Context .......................................................................30

2 Concepts .....................................................................512.1 Disability .....................................................................512.2 Living conditions............................................................552.3 Disability and living conditions..........................................562.4 Combining two traditions and ICF......................................58

3 Living conditions among people with activity limitations in low income countries ...........................................................60

3.1 Disability data in low-income countries...............................623.2 Relevant studies in Zambia ..............................................75

4 Design and Methods.......................................................764.1 Scope of the survey .......................................................764.2 Sample Design and Coverage...........................................774.3 Sample Size Determination..............................................784.4 Sample Stratification and Allocation...................................784.5 Sample Selection...........................................................804.6 Selection of Standard Enumeration Areas (SEAs) or PSUs ......814.7 Selection of Households ..................................................824.8 Organisation of the Survey ..............................................824.9 Data Collection..............................................................834.10 Estimation Procedure ..................................................834.11 Data Processing and Analysis........................................864.12 Expected Deliverables .................................................86

5 Results ........................................................................875.1 Results from the study on level of living conditions ...............885.2 Disability study ........................................................... 120

6 Discussion.................................................................. 159

6

7 Conclusions ................................................................ 171

8 References................................................................. 174

9 Appendices................................................................. 179

7

Tables Table 1.1 Summary of key performance indicators……………………… 47

Table 3.1 Prevalence (%) of disability in selected countries …...… 66

Table 4.1 Sample allocation table……………………………………………..…..80

Table 5.1 Number of households and individuals in the study....88

Table 5.2 Mean household size ...........................................89

Table 5.3 Mean age of household ........................................90

Table 5.4 Gender, household type and Region .......................91

Table 5.5 Mean dependency ratio by Household type and Region 93

Table 5.6 Distribution of Disabled household members by province 95

Table 5.7 Disability by gender............................................96

Table 5.8 Disability by gender by region...............................96

Table 5.9 Disability by age and region..................................97

Table 5.10 Marital status ....................................................98

Table 5.11 School attendance ..............................................99

Table 5.12 School attendance by Type of disability................. 101

Table 5.13 School grade completed..................................... 102

Table 5.14 Languages written............................................ 103

Table 5.15 Work status: Unemployment............................... 104

Table 5.16 Unemployment by province ................................ 105

Table 5.17 Skills ............................................................. 107

Table 5.18 Monthly salary (in 1000) .................................... 108

Table 5.19 Regional distribution of households ...................... 109

Table 5.20 Employment .................................................... 110

8

Table 5.21 Household income and expenses (in 1000 ZMK)..... 111

Table 5.22 Housing ownership ........................................... 116

Table 5.23 Age profile of person with disability ...................... 120

Table 5.24 Distribution of the type of main disability by gender. 121

Table 5.25 Which of the services, if any, are you aware of and have ever needed/received?.................................................. 123

Table 5.26 Gap analysis (services not received) by type of disability 125

Table 5.27 Assessment of services received.......................... 127

Table 5.28 Type of school attended..................................... 130

Table 5.29 Accessibility at home......................................... 132

Table 5.30 Accessibility from home ..................................... 133

Table 5.31 Type of assistive devices in use........................... 135

Table 5.32 Assistance needed in daily life activities ................ 137

Table 5.33 Involvement in family life................................... 139

Table 5.34 Characteristics of the severity scales. ................... 142

Table 5.35 Mean scores on severity scales by type of disability. 142

Table 5.36 Mean scores on severity scales by gender.............. 145

Table 5.37 Mean scores on severity scales by region............... 146

Table 5.38 Mean scores on severity scales by Self-evaluation of Physical and Mental Health ............................................ 149

Table 5.39 Mean severity scores on severity scales by indicators of living conditions. ......................................................... 152

Table 5.40 Contrasting disability paradigms for research ......... 154

9

Summary

(ME Loeb, AH Eide)

This representative study on living conditions among people

with disabilities1 in Zambia is the result of an international co-

operation between Southern Africa Federation of the Disabled

(SAFOD), Zambian Federation of the Disabled (ZAFOD),

Norwegian Federation of Organisations of Disabled People

(FFO), University of Zambia Institute for Economic and Social

Research, the Central Statistical Office in Zambia (CSO) and

SINTEF Health Research, Norway. The study has been funded

by the Atlas Alliance on behalf of Norwegian Agency for

Development Co-operation (NORAD). In addition to the study

itself, a capacity building component has been an important

part of the collaboration.

Forming part of a Regional initiative to establish baseline data

on living conditions among people with disabilities in Southern

Africa, the study in Zambia is the fourth to be published. The

report is designed to provide both an overview of the situation

for people with disabilities in Zambia today and a comparison

to the situation for those of the population without disabilities.

1 The terms “disability” and “activity limitation” are used interchangeably in the text. (See 2.1)

10

The report also introduces to Zambia, the conceptual approach

of assessing disability as limitations in activities of daily living

and restrictions in social participation rather than by means of

physical or mental impairment.

The study design was developed in close collaboration with a

broad range of stakeholders. Organisations of people with

disabilities and individuals with disabilities have played a

particularly active role during development of the design and

the collection of data. Based on previous studies in the Region,

the research instrument comprises a study on living conditions

among households with and without disabled members, a

screening instrument (for disability), a section with specific

questions to individuals with disabilities, and a matrix that

represents an operationalisation of core concepts from the

International Classification of Functioning, Disability and

Health (ICF).

Using a sampling frame provided by the Central Statistical

Office covering all provinces in the country, a total of 2885

households with at least one disabled family member and 2866

households without disabled members were sampled;

altogether 5751 households.

A comparison with results from the Namibian, Zimbabwean

and Malawian studies is included for some major indicators. In

general, the patterns observed (both similarities and

differences) between people with and without disabilities

11

demonstrated in the other three countries were replicated in

Zambia.

The study design allows for the following types of

comparisons: between individuals with and without disabilities,

and between households with and without disabled family

members.

Some Results:

With regards to demographics, households with disabled

members were found to have higher mean age and they were

larger, having more children than did control households.

These and other socio-demographic differences may be the

result of certain coping mechanisms that have been

established in households with disabled members, mechanisms

intended to cater particularly to the increased care duties

found in these households.

Systematic gender differences were found between households

with and without a disabled family member; a higher

proportion of those with disabilities were men compared to the

‘control’ non-disabled population. This is in line with the

previous studies in the region, but this gender difference was

demonstrated to be significantly higher in the Zambian sample

as compared to the previous three studies. Subsequent

analyses were controlled for the possible confounding effects

of gender.

12

As was found in Namibia, Zimbabwe and Malawi, school

attendance is clearly lower among persons with disabilities.

Among children 5 years of age or older, 24% of those with

disabilities had never attended school, while the corresponding

figure for non-disabled was 9%. Interestingly, however, school

performance (measured as highest school grade completed)

was not different between the two groups. Among those who

had attended school, 80% had completed Grade 9 as their

highest grade (both those with and those without disabilities).

This result is similar to results from Malawi, but different than

that found in the other studies where we found that among

those who had attended school, performance was lower among

those with disabilities, i.e. fewer of those with disabilities

achieved higher levels of education.

Unemployment in Zambia is high – and we find among our

sample a high proportion of both people with and without

disabilities who are “not currently working”. However,

significantly more (about 55%) of those with disabilities are

unemployed compared the non-disabled sub-sample (42%).

While these figures are not meant to represent official

unemployment figures, they provide an indication of the

current situation in Zambia. Unemployment data collected

from Namibia, Zimbabwe and Malawi were, in fact, higher.

While indicators of unemployment are high, it was however

shown that among the same group of potentially economically

active persons 15 – 65 years of age, 59% of those with

13

disabilities had acquired some skill, the same as those without

disabilities. This is most likely a reflection of what is offered to

children/persons with disability, i.e. skills training is (more)

common in the special education services for persons with

disabilities. Similar results were obtained in Namibia and

Malawi and to an even larger extent in Zimbabwe where an

extensive system of specialized services for individuals with

disabilities, in particular employment opportunities in sheltered

workshops, have existed in that country since 1950’s.

Furthermore, mean monthly salaries, for those who provided

that information, were lower among those with compared to

those without (though these differences were not statistically

significant).

Overall, on most indicators the comparison between the two

types of households no major differences were detected; that

is, households with disabled members, in the sample, have

similar standards of living as the control households. This is

demonstrated when assessing employment (fewer households

with a disabled family member have someone working)

household income, housing standard, and access to

information. It should be noted that this finding is a direct

result of the sampling procedure; i.e. that households without

a disabled family member were selected as neighbouring

households to the household with a disabled family member.

In this way, proximity of ‘case’ and ‘control’ households

reduces the differences between them.

14

Around 42% of those with disabilities have a self-reported

physical disability (major or minor disability, paralysis), and

47% reported sensory impairments (seeing, hearing and

communication), while intellectual disabilities, learning

disorders and emotional disorders accounted for 11% of

reported cases. It is interesting to note that these figures are

similar to those reported in Namibia, Zimbabwe and Malawi.

The major causes of disability were reported to be either the

result of illness, birth-related or congenital, and accidental.

Over half of the respondents reported onset of disability before

the age of 5 years, indicating a serious challenge to health

services for mothers and children in the country.

Among services available to persons with disabilities, health

services and traditional healers were found to be available for

the majority of those with disabilities, with over 60% of those

who needed these particular services having actually received

them. At the other end of the scale, the most noticeable

shortcomings with regards to service provision were vocational

training, welfare services, educational, assistive device

services and counselling services. Vocational training and

welfare services were received by about 8% of those who

claimed that they needed them.

An assessment of various forms of assistance that may be

needed by individuals with disabilities in performing daily life

activities showed that a large majority of respondents claimed

to need emotional support, surpassing all other types of

15

assistance required. Economic support, or assistance with

finances, was the second most often mentioned form of

assistance needed.

With respect to the role of the person with a disability in the

household, results indicate certain problems of social exclusion

which should not be overlooked. Among these problems the

most pronounced concern is not taking part in one’s own

traditional ceremonies, not making important decisions about

one’s life and the high proportion who are not married and do

not have own children. These, and other indicators of social

exclusion, imply that awareness creation, information and

education directed at the families of individuals with disabilities

is urgently needed.

An overview of accessibility to different services, facilities and

institutions gives a mixed picture. Hotels and banks are

accessible to less than 40% of individuals with disabilities who

use them. Places of worship, health care clinics, shops and

schools are on the other hand reported to be accessible by the

majority of those with disabilities (over three-fourths). Perhaps

the most notable shortcomings are public transport, accessible

to 65% and the workplace, accessible to 68% of the disabled

population. Close to one-third of those with disabilities who

use public transport or who work experience barriers to

accessing these important services. The mixed picture

demonstrated with regards to accessibility indicates that the

16

potential exists for improving accessibility for people with

disabilities.

A minority of those surveyed (13%) claimed to use assistive

devices. It is interesting to note that this figure is lowest of the

countries surveyed; Malawi (17%), Namibia (18%) and

Zimbabwe (26%). It is further shown that most of the devices

in use are functioning well (76%). Depending on the type of

device in use, between 25 and 75% of those who use a device

had received instructions on their use. With respect to

maintenance, about 4% of devices are maintained through

government services, about 67% assumed responsibility

themselves (or through their families) and another 21%

claimed that their device was either not maintained or that

they couldn’t afford maintenance/repairs. As was found in

Namibia and Malawi, a higher share of devices is supplied by

private sources in Zambia, reflecting a stronger tradition of

privately initiated and organised services for individuals with

disabilities in those countries. In contrast, the supply of

devices in Zimbabwe is more balanced between private and

public sources.

Certain elements of the information collected during the

survey can be used to define the severity of a person’s

situation with respect to their disability. For example, data on

both an individual’s needs for services and the daily activities

that a person may need help in accomplishing may be used for

this purpose. Simple scores are constructed by adding up the

number of services one needs or the number of daily tasks one

17

needs help in accomplishing, to indicate the severity of a

person’s situation. The more services needed : the worse off

that person is; or the more help needed in doing daily tasks :

the worse off that person is.

Furthermore, a matrix was developed and applied to map an

individual’s activity limitations and participation restrictions

according to different domains (sensory experiences, basic

learning and applying knowledge, communication, mobility,

self care, domestic life, interpersonal behaviours, major life

areas and community, social and civic life).

By adding up an individual’s responses to each of 43 items a

single activity limitation score and a single participation

restriction score is developed.

These four severity scores were assessed according to

different parameters. It was found that individuals with

mental/emotional impairments needed more help in their daily

activities than did those in other disability categories. This

group also reported more activity limitations and restrictions in

social participation than others. Individuals with

mental/emotional problems thus reported that they experience

more barriers to full participation in society. These results

mirror those found in the surveys carried out in Namibia,

Zimbabwe and Malawi.

18

Activity limitation and participation restriction scores are

similar for both sexes. These scores are not meant to be

gender dependent – or to differentiate between genders – but

to classify according to ability to carry out/perform activities

under different circumstances. Furthermore, analyses reveal

similar scores for service needs and help in daily activities

between men and women. Though the individual items in the

daily activity help score may be seen as more gender specific,

no significant differences are detected in the current sample.

The constructed disability severity scores are further assessed

with respect to self-reported physical and mental health. We

find that, apart from the service needs score, the daily activity

help score, and activity limitation and participation restriction

scores are correlated with these health indices. That is, poorer

health status (either physical or mental) is associated with

increased need for help with daily activities, and higher

degrees of activity limitation and restrictions in social

participation. The service needs score behaves somewhat

differently, and, though the results are significant, they show

increased needs both for those with more health problems and

for those with less – perhaps indicating that those who are

most active also have greater needs.

Assessing the constructed scores based on activity limitations

and participation restrictions with respect to indicators of living

conditions revealed that both scores are associated with

indicators of living conditions. The more severe an individual’s

19

disability as measured through limitations in daily life activities

and restrictions in social participation, the lower the level of

school attendance and employment.

Applicability of results:

The publication of the results of the Living Conditions Survey

in Zambia marks three milestones. Firstly, we report on the

active participation and involvement of people with disabilities

and their organisations throughout the entire process of

undertaking this survey. In this regard ZAFOD has assumed a

leading role. Secondly, we report on a new approach to

defining disability in a research process. We base our

assessment of disability on concepts presented in the

International Classification of Functioning, Disability and

Health (ICF), in particular activity limitations and participation

restrictions. Our intention is to shift focus from an individual’s

physical or mental impairment (the “what’s wrong with you?”

approach) to an individual’s capacity and performance in their

environment (the “what do you need to fully participate in

society” approach). Finally, the baseline data and results

produced through this study can be applied directly as

documentation of the living standards among people with

disabilities and their families, and as a basis for comparison

with both non-disabled individuals and families without a

disabled family member. Furthermore the results can be

applied later for monitoring purposes. This information is

potentially useful when decisions are made on utilisation of

meagre resources, as documentation and evidence to

prospective donors or other funding sources, and as a tool for

20

organisations of disabled people in setting priorities, educating

their own members and the population in general, and as a

basis for advocacy.

It is recommended that the results from this study are

considered, together with other relevant sources, as a basis for

dialogue between authorities, professionals and organisations

of people with disabilities, for developing policies, setting

priorities, and for developing concrete measures within

selected areas of priority.

21

Introduction

(Felix Simulunga – Federal Coordinator – ZAFOD)

Zambia has a population of about 11,798,6782 people out of

which according to WHO estimates 10% to 20% are expected

to be persons with disabilities. However, according to the 2000

Census of Population and Housing in Zambia, Zambia’s

defacto3 population then stood at 9,337,425. From this,

256,690 were persons with disabilities (representing approx.

2.7% of the total population) out of which 53% were male and

47% were female.

It has been observed that the large majority of people with

disabilities in Zambia very often are living under poor

conditions and lack basic support that could play a significant

role in improving their lives considerably.

Persons with disabilities are further often marginalized and

belong to the poorest segments of society (UN, 1996), further

adding to a situation of powerlessness and lack of political

influence.

2 Zambia’s Draft Fifth National Development Plan (FNDP) 2006 - 2010 3 Usual household members and visitors who spent the census night at that household excluding foreign diplomatic personnel accredited to Zambia and

22

The most important outcome of the International Year of

Disabled Persons (1981), and forming an important tool

throughout the United Nations Decade of Disabled Persons

(1983 – 1992), was the World Programme of Action

Concerning Disabled Persons (UN, 1993). The Programme

emphasises the right of persons with disabilities to the same

opportunities as other citizens and to an equal share in the

improvements in living conditions resulting from economic and

social development.

In 1993, the UN General Assembly approved The Standard

Rules on the Equalisation of Opportunities for Persons with

Disabilities (Resolution 48/96) (UN, 1994), setting specific

targets and implying a strong moral and political commitment

on behalf of States to take action for the equalisation of

opportunities for persons with disabilities.

The Standard Rules and The World Program of Action both

give high priority to the collection and dissemination of

information on living conditions of people with disabilities and

promote comprehensive research on all aspects that may

affect the lives and opportunities of disabled people.

Also the Continental Plan of Action for the African Decade of

Persons with Disabilities (1999 – 2009) (AU, 2000) and the

National Plan of Action on Disability in Zambia (2003 – 2008)

Zambian nationals accredited to foreign embassies and their families, Zambian migrant workers and students

23

(ZAFOD, 2003) explicitly emphasizes support of research as a

tool for promoting the interests and participation in society of

people with disabilities.

ZAFOD was established in 1990 and is the national non-

governmental umbrella organisation for all disabled peoples

organisations in the country. The National Plan of Action on

Disability in Zambia (2003 – 2008) has been drafted by ZAFOD

with participation from a number of Zambian stakeholders and

funded by Comic Relief through POWER International, both

based in the United Kingdom. Research and disability statistics

is covered by the plan. The strategy for action on this point

includes establishment of a data bank on disability, initiation of

research on social, economic and participation issues affecting

the lives of persons with disabilities and their families, and the

inclusion of persons with disabilities in data collection and

dissemination of data on disability issues.

In keeping up with these needs and ideals, and with funding

from the Norwegian Government (NORAD4) through the Atlas

Alliance5, Norwegian Federation of the Disabled (FFO) and

SINTEF Health Research, the partners involving those

highlighted above in collaboration with the Central Statistical

Office in Zambia (CSO), the University of Zambia Institute for

Economic and Social Research (INESOR), the Zambia

4 NORAD – Norwegian Agency for International Development 5 The Atlas Alliance is an organisation formed by Norwegian organisations of disabled persons, patients and their relatives collaborating to support disabled people in low income countries

24

Federation of the Disabled and the Southern Africa Federation

of the Disabled (SAFOD)6 decided to embark on a national

wide research project to ascertain the living conditions among

persons with disabilities or activity limitations in Zambia.

On behalf of ZAFOD, I would like to thank all the stakeholders

who ensured that this research project on the Living

Conditions among Persons with Disabilities or Activity

Limitations in Zambia was made possible and without whose

participation this exercise would not have been as successful

as it has been.

We are especially very grateful to Alexander Phiri of the

Southern Africa Federation of the Disabled (SAFOD) who

managed to convince the Norwegian Federation of the

Disabled (FFO) and SINTEF Health Research Foundation to

choose Zambia as their next and fourth destination in their

Living Conditions Research Project that they were carrying out

in the Southern African region.

FFO (thanks to especially Jarl Oversen and Astrid Westby)

should be commended for agreeing to support the work in

Zambia and for having confidence in ZAFOD to take the mantle

of coordinating the project.

6 SAFOD – a regional umbrella organisation of disabled people based in Bulawayo in Zimbabwe

25

We thank Professor Arne H. Eide of SINTEF for managing to

put in place an application proposal to the Norwegian

Government as well as other members of staff in SINTEF,

particularly Mitch Loeb and Karl-Gerhard Hem, for their

personal commitment, moral support and interest in ensuring

that the project was funded and smoothly implemented in

Zambia without which an exercise of this magnitude would

have been impossible to carry out.

We are also thankful to our local partners namely the

University of Zambia Institute for Economic and Social

Research (INESOR) and Central Statistical Office (CSO) for

agreeing to partner with ZAFOD, as research experts, in the

implementation of the project in Zambia. Specific mention is

directed to Dr. Mutumba Bull (Director of INESOR), Dr. T.J.

Ngulube (Coordinator of Health Research at INESOR) and Dr.

C.A. Njovu (Research Fellow) for their keen interest in uplifting

the welfare of persons with disabilities and therefore rendering

as much technical and moral support as possible to ensure

that the project was launched off the ground. Great kudos also

goes to Mr. Goodson Sinyenga of CSO for his invaluable

technical expertise in designing the sample and in the

production of survey maps.

My thanks would be incomplete if I failed to mention the

professional and hard work of members of the ZAFOD

secretariat and Board (professionally chaired by Mr John

Miyato – once deputy Minister of Finance) as well as to

26

acknowledge the contribution of all individuals and

organisations who participated in making this project a reality.

As in other countries (namely Zimbabwe, Namibia and Malawi)

where the survey has been conducted, the overall objective of

the Survey was to contribute to the improvement of the living

conditions among people with activity limitations in Zambia. In

addition, the survey was intended to provide a basis on which

to:

a) Develop a strategy for the collection of comprehensive, reliable and culturally adapted statistical data on living conditions among people with disabilities

b) Initiate a discussion on the concepts and understanding of “disability”

c) Include and involve people with disabilities in every step of the research process

d) Monitor the impact of government policies, programmes and donor support on the well being of the population with activity limitations.

e) Identify various forms of activity limitations that people living with disabilities face

f) Provide various users with a set of reliable indicators against which to monitor development.

g) Identify appropriate assistive devises required for specific forms of disabilities

27

h) Identify vulnerable groups in society and enhance targeting in policy implementation.

i) Establish appropriate skills training package for various forms of disability

The project was launched in March 2005 through a

Consultative Conference of various stakeholders to fully brief

them on the work being undertaken, the reasons for it and the

expected outcome. Senior representatives of Research

Institutions, Disabled Peoples Organizations, other Non

Governmental Organisations, as well as relevant Government

ministries and agencies attended this meeting. (A list of

participants is presented in Appendix 1.)

In August 2005, 10 Supervisors (from INESOR and ZAFOD)

undertook training on how to supervise the research exercise.

In September 2005, 38 Enumerators were trained on how to

undertake the research from which the best 207 were chosen

to go into the first phase of the survey from September to

November 2005 covering 5 remote provinces of Zambia

namely: Northern, Eastern, Western, North Western and

Luapula. From these 20 enumerators who went in the field, 6

were persons with disabilities and 4 were parents of children

with disabilities and the rest were able bodied. Also from

these, 9 were women and 11 were men.

7 See Appendix 4: List of Enumerators and Supervisors involved in the Research

28

From the 20 enumerators, 16 were later chosen - based on

their performance in the first phase – to undertake the second

phase of the research covering the remaining 4 provinces of

Zambia namely Copperbelt, Central, Lusaka and Southern. The

2nd phase research work commenced in February 2006 and

ended in May 2006. From these 16 enumerators, 5 were

persons with disabilities and 3 were parents of children with

disabilities from ZAFOD affiliates while the rest were able-

bodied enumerators from INESOR and CSO.

Some of the successes of the project included, but were not

limited to the fact that:

SINTEF, INESOR, CSO and ZAFOD managed to develop a strategy and methodology for the collection of comprehensive, reliable and culturally adapted statistical data on living conditions among people with disabilities in Zambia;

This activity managed to raise awareness among research participants on concepts and understanding of “disability” as well as to expose persons with disabilities to research concepts and methodologies thus giving them a skill in research work;

The project, through technical support from SINTEF and financial support from FFO and the Atlas Alliance, helped in increasing the capacity of ZAFOD in its work of being a truly representative umbrella organisation in issues concerning persons with disabilities including the advocacy for disability issues to be incorporated in the Republican Constitution as well as the 5th National Development Plan (2006-2010) both of which are currently in the process of being formulated;

29

The project also managed to bring together two main research institutions in Zambia whose diverse opinions and methodologies in research, helped in enriching the survey process on disability. Apart from this, the project also provided an opportunity for the research institutions to learn from each other and also to understand better research issues concerning persons with disabilities;

In conclusion, the research being the first of its kind in Zambia

provides a more precise indication of the true living conditions

among people with disabilities or activity limitations in Zambia

than has previously been the case. This is a great window

which the government and other development agencies and

partners should be able to utilise in creating policies and other

interventions that effectively and positively address the living

conditions of persons with disabilities or activity limitations in

the country.

30

1 Context8

(Felix Simulunga – ZAFOD)

History

The indigenous Khoisan hunter-gatherer occupants of Zambia

began to be displaced or absorbed by technologically advanced

migrating tribes about 2,000 years ago. The major waves of

Bantu-speaking immigrants began in the 12th century.

Among them, the Tonga people were first to settle in Zambia

and are believed to have come from the Far East near the "big

sea". Other groups followed with the greatest influx coming

between the late 17th and early 19th centuries. These later

migrants came primarily from the Luba and Lunda tribes of

southern Democratic Republic of Congo and northern Angola

but were joined in the 19th century by Ngoni peoples from the

south. By the later part of that century, the various peoples of

Zambia were largely established in the areas they currently

occupy.

8 Sources:

Microsoft Encarta Encyclopedia

CIA World Factbook on Zambia 2006

Zambia’s Draft Fifth National Development Plan (FNDP) 2006 – 2010

2000 National Housing and Population Census in Zambia by the Central Statistical Office

31

Except for the occasional Portuguese explorer, the area lay

untouched by Europeans for centuries. After the mid-19th

century, it was penetrated by Western explorers, missionaries,

and traders. In 1855, missionary and explorer David

Livingstone became the first European to see the magnificent

waterfalls on the Zambezi River. He named them Victoria Falls

after Queen Victoria. The falls are known in Zambia as Mosi-O-

Tunya (in the Lozi dialect), "the smoke that thunders". The

Zambian town, Livingstone, near the falls is named after him.

In 1888, Cecil Rhodes, spearheading British commercial and

political interests in Central Africa, obtained mineral rights

concession from local chiefs. In the same year, Northern and

Southern Rhodesia (now Zambia and Zimbabwe, respectively)

were proclaimed to be within the British sphere of influence.

Southern Rhodesia was annexed formally and granted self-

government in 1923, and the administration of Northern

Rhodesia was transferred to the British Colonial Office in 1924

as a protectorate. Mining began in the Copperbelt in 1934.

In 1953, both Rhodesias were joined with Nyasaland (now

Malawi) to form the Federation of Rhodesia and Nyasaland.

Northern Rhodesia was the centre of much of the turmoil and

crisis that characterized the federation in its last years. At the

core of the controversy were insistent African demands for

greater participation in government and European fears of

losing political control.

32

A two-stage election held in October and December 1962

resulted in an African majority in the legislative council and a

coalition between two Zambian nationalist parties, i.e. United

National Independence Party (UNIP) and the African National

Congress (ANC). The council passed resolutions calling for

Northern Rhodesia's secession from the federation and

demanding full internal self-government under a new

constitution and a new National Assembly based on a broader,

more democratic franchise. On 31 December 1963, the

federation was dissolved, and Northern Rhodesia became the

Republic of Zambia on 24 October 1964.

At independence, despite its considerable mineral wealth,

Zambia faced major challenges. Domestically, there were few

trained and educated Zambians capable of running the

government, and the economy was largely dependent on

foreign expertise. Abroad, three of its neighbors--Southern

Rhodesia and the Portuguese colonies of Mozambique and

Angola--remained under white-dominated rule. Southern

Rhodesia's white-ruled government unilaterally declared

independence in November, 1965. In addition, Zambia shared

a border with South African-controlled South-West Africa (now

Namibia). Zambia's sympathies were with forces opposing

colonial or white-dominated rule. During the following decade,

it actively supported movements such as the National Union

for Total Independence of Angola (UNITA), the Zimbabwe

African People's Union (ZAPU), the African National Congress

of South Africa (ANC), and the South-West Africa People's

Organization (SWAPO).

33

Conflicts with Southern Rhodesia resulted in the closing of

Zambia's borders with that country and severe problems with

international transport and power supply. However, the Kariba

hydroelectric station on the Zambezi River provided sufficient

capacity to satisfy the country's requirements for electricity

(despite the fact that the hydro control center was on the

Rhodesian side of the border). A railroad to the Tanzanian port

of Dar-es-Salaam, built with Chinese assistance, reduced

Zambian dependence on railroad lines south to South Africa

and west through an increasingly troubled Angola.

Until the completion of the railroad, however, Zambia's major

artery for imports and the critical export of copper was along

the Tanzania Zambia Road (also called Great North Road),

running from Zambia to the port cities in Tanzania. Also a

pipe-line for oil was built from Dar-es-Salaam to Ndola in

Zambia. During certain times, some things were airlifted at a

great cost. By the late 1970s, Mozambique and Angola had

attained independence from Portugal. Zimbabwe achieved

independence in 1980 in accordance with the 1979 Lancaster

House Agreement, but Zambia's problems were not solved.

Civil war in the former Portuguese colonies generated an influx

of refugees and caused continuing transportation problems.

The Benguela railway, which extended west through Angola,

was essentially closed to traffic from Zambia by the late

1970s. Zambia's strong support for the ANC of South Africa,

which had its external headquarters in Lusaka, created

34

security problems as South Africa raided ANC targets in

Zambia.

In the mid-1970s, the price of copper, Zambia's principal

export, suffered a severe decline worldwide. In Zambia's

situation, the cost of transporting the copper great distances

to international markets was an additional strain. Zambia

turned to foreign and international lenders for relief, but as

copper prices remained depressed, it became increasingly

difficult to service its growing debt. By the mid-1990s, despite

limited debt relief, Zambia's per capita foreign debt remained

among the highest in the world.

Politics

Politics of Zambia takes place in a framework of a presidential

representative democratic republic, whereby the President of

Zambia is both head of state and head of government, and of

a pluriform multi-party system. Executive power is exercised

by the government. Legislative power is vested in parliament.

The President, who is elected by popular vote every five years,

appoints a Cabinet from among the members of the National

Assembly. The Zambian Legislative branch, the National

Assembly is comprised of 159 members, 150 of which are

elected by popular vote to serve five-year terms, 8 are

nominated by the President and 1 is the Speaker.

The last general elections were held on 27th December 2001

with the next elections scheduled to take place on 28th

35

September 2006 where 5 political parties namely the

Movement for Multiparty Democracy (MMD), the United

Democratic Alliance (UDA), the Patriotic Front (PF), the

Heritage Party (HP) and the All Peoples Congress Party (APC)

are contesting the Republican presidency with the rest (of

which there are more than six political parties) fielding only

Parliamentary and Local Government candidates.

Zambia’s legal system is based on English common law as well

as customary law with the Supreme Court being the highest

court of appeal in the land.

Geography

Zambia is a landlocked country

in Southern Africa. It borders the

Democratic Republic of the

Congo to the north, Tanzania on

the north-east, Malawi on the

east, Mozambique, Zimbabwe,

Botswana, and Namibia to the

south, and Angola on the west.

Formerly Northern Rhodesia, the

country is named after the Zambezi River.

Zambia has a tropical climate and consists mostly of high

plateau with some hills and mountains.

36

Zambia is drained by two major river basins: the Zambezi

River basin, in the south; and the Congo River basin, in the

north. Of the two basins, the part of Zambia drained by the

Zambezi River basin is about three-quarters of the country's

total area. The part drained by the Congo River basin is about

a quarter of the country's total area.

In the Zambezi River basin, there are four major rivers that

either run through Zambia or form the country's borders with

its neighbours: the Kafue, the Luangwa, the Kwando and the

Zambezi. The last two form part of Zambia's southern borders.

The Kwando River forms Zambia's southwestern border with

Angola, then it runs eastwards along the northern boundary of

Namibia's Caprivi Strip before spreading into the Linyanti

Marshes, which finally drain eastwards into the Zambezi. From

its confluence with the Kwando, the Zambezi flows eastwards,

forming the whole of Zambia's border with Zimbabwe.

The other two rivers, Kafue and Luangwa, lie entirely within

Zambia and are major tributaries of the Zambezi. Their

confluences with the Zambezi are on Zambia's Zimbabwean

border at Chirundu (for the Kafue) and Luangwa town (for the

Luangwa River). Before its confluence, the Luangwa River

forms part of Zambia's border with Mozambique. From

Luangwa town, the Zambezi leaves Zambia and flows into

Mozambique, and eventually spills its waters into the Indian

Ocean's Mozambique Channel. The Zambezi falls 360 feet

(100 m) over the one-mile wide (1.6 km) Victoria Falls,

37

located in the South West corner of the country and later fills

the mighty Lake Kariba.

The Zambezi Valley, running along the southern border, is

both deep and wide. Moving northwards the terrain shifts into

a high plateau ranging from 3,000-4,000 feet (900–1,200 m)

up to over 6,000 feet (1,800 m) in the northern area of the

Copperbelt. In the east, the Luangwa valley curves its way

south with hills on either side until it enters the Zambezi. In

the west, large plains are a key geographic feature, flooding

the western plains during the annual rainy season (typically

October though April).

As regards the Congo River basin, Zambia hosts two major

rivers from the Congo River basin: the Chambeshi and the

Luapula; the latter forms part of Zambia's border with the

Democratic Republic of Congo. The Chambeshi lies entirely

within Zambia and is the furthest headstream of the Congo

River. It flows into the Bangweulu Wetlands, which provide the

waters that form the Luapula River. The Luapula flows

southward then westward before it turns northward until it

enters Lake Mweru. The lake's other major tributary is the

Kalungwishi River, which flows into it from the east. The Lulua

River drains Lake Mweru, flowing out of the northern end.

Lake Tanganyika is the other major hydrographic feature that

belongs to the Congo River basin. The lake's south-eastern

end receives water from the Kalambo River, which forms part

38

of Zambia's border with Tanzania. This river has Africa's

second highest uninterrupted waterfall, the Kalambo Falls.

(The continent's highest waterfalls are the Tugela Falls of

South Africa.)

Economy

Over 70 percent of Zambians live in poverty. Per capita annual

incomes are as low as $395 thus placing the country among

the world's poorest nations. Social indicators continue to

decline, particularly in measurements of life expectancy at

birth (about 37 years) and maternal mortality (729 per

100,000 pregnancies). The country's rate of economic growth

cannot support rapid population growth or the strain which

HIV/AIDS related issues (i.e., rising medical costs, decline in

worker productivity) place on government resources. Zambia

is also one of Sub-Saharan Africa's most highly urbanized

countries. Almost one-half (44%) of the country's 12 million

people are concentrated in a few urban zones strung along the

major transportation corridors, while rural areas are under-

populated. Unemployment and underemployment are serious

problems.

HIV/AIDS is one of the nation's greatest problems, with about

17% prevalence among the adult population. HIV/AIDS will

continue to ravage Zambian economic, political, cultural, and

social development for the foreseeable future.

Once a middle-income country, Zambia began to slide into

poverty in the 1970s when copper prices declined on world

39

markets. The socialist government then led by Dr Kenneth

Kaunda made up for falling revenue with several abortive

attempts at International Monetary Fund structural adjustment

programmes (SAPs), which led to his fall after popular outcries

from the people.

After democratic multi-party elections, the Chiluba

government (1991-2001) came to power in November 1991

committed to an economic reform program. The government

privatized most of the parastatals (state-owned corporations),

maintained positive real interest rates, eliminated exchange

controls, and endorsed free market principles. However,

corruption also grew dramatically under the Chiluba

government.

The Mwanawasa government, which came to power in 2001,

has continued on the path of economic reform. Zambia is still

dealing with economic reform issues such as the size of the

public sector and improving Zambia's social sector delivery

systems. NGOs and other groups have contended that the

SAPs, in Zambia and other countries, have had very

detrimental effects on the poor. Zambia's total foreign debt

exceeded $7 billion when the country qualified for Highly

Indebted Poor Country Initiative (HIPC) debt relief in 2000,

contingent upon meeting certain performance criteria.

Initially, Zambia hoped to reach the HIPC completion point,

and benefit from substantial debt forgiveness, in late 2003. In

40

January 2003, the Zambian Government informed the IMF and

World Bank that it wished to renegotiate some of the agreed

performance criteria calling for privatization of the Zambia

National Commercial Bank and the national telephone and

electricity utilities. Although agreements were reached on

these issues, subsequent overspending on civil service wages

delayed Zambia's final HIPC debt forgiveness from late 2003

to early 2005, at the earliest. In an effort to reach HIPC

completion in 2004, the government drafted an austerity

budget for 2004, freezing civil service salaries and increasing a

number of taxes. The labor movement and other components

of civil society objected to the sacrifices called for in the

budget, and, in some cases, the role of the international

financial institutions in demanding austerity.

In 2005, Zambia reached the HIPC Completion Point resulting

in debt cancellation. In addition to this, Zambia also became

eligible for debt relief under the G8 initiative which proposed

to cancel 100 percent of all debts owed to the International

Monetary Fund (IMF), the African Development Bank (ADB)

and the World Bank. Following the debt relief provided as a

result of the enhanced HIPC initiative, Zambia’s foreign debt

came down to US$4 billion in 2005 and in 2006 when the G8

commitments were effected through the Multilateral Debt

Relief Initiative (MDRI), Zambia’s external debt significantly

reduced to around US$600 million.

41

The Zambian economy has historically been based on the

copper mining industry. Output of copper had fallen, however,

to a low of 228,000 metric tons in 1998, after a 30-year

decline in output due to lack of investment, low copper prices,

and uncertainty over privatization. In 2002, following

privatization of the industry, copper production rebounded to

337,000 metric tons. Further improvements in the world

copper market have magnified the effect of this volume

increase on revenues and foreign exchange earnings.

The Zambian Government is pursuing an economic

diversification program to reduce the economy's reliance on

the copper industry. This initiative seeks to exploit other

components of Zambia's rich resource base by promoting

agriculture, tourism, gemstone mining, manufacturing,

construction and hydro power. The Zambian government has

recently been granting licenses to international resource

companies to prospect for other minerals other than copper

such as nickel and uranium.

Demographics

Zambia's population is comprised of about 72 Bantu-speaking

ethnic groups but almost 80% of Zambians belong to the

seven main ethno-linguistic groups, which are the Bemba,

Nyanja-Chewa, Tonga, Lunda, Luvale, Kaonde, and Lozi. Each

ethnic group is concentrated in a particular geographic region

of the country and many groups are very small and not as well

known. Most Zambians are subsistence farmers.

42

Expatriates, mostly British and South Africans, live mainly in

Lusaka and in the Copperbelt in northern Zambia, where they

are employed in mines and related activities. Zambia also has

a small but economically important Asian population, most of

whom are Indians. These have recently been joined by the

Chinese. In recent years over 300 dispossessed white farmers

left Zimbabwe at the invitation of the Zambian government

and have taken up farming in the southern region.

The country is 44% urban. The HIV/AIDS epidemic is ravaging

Zambia. Nearly 1 million Zambians are HIV positive or have

AIDS. An estimated 100,000 died of the epidemic in 2004.

Over a half-million Zambian children have been orphaned. Life

expectancy at birth is just under 40.

Religion

The Zambian constitution identifies the country as a Christian

nation, but a variety of other religious practices exists.

Traditional religious thought blends easily with Christian beliefs

in many of the country's syncretic churches. Islam also has a

visible presence especially in urban settings. Zambia also has

a very small Jewish community.

Within the Christian community, a variety of denominations

can be found: Roman Catholic, Anglican, Pentecostal,

Lutheran, a variety of Evangelical denominations. These grew,

adjusted and prospered from the original missionary

settlements (Portuguese and Catholicism in the east from

43

Mozambique) and Anglican (English and Scottish influences)

from the south. Except for some technical positions (e.g.

physicians), western missionary roles have been assumed by

native believers. After Frederick Chiluba (a pentecostal

Christian) became President in 1991, Pentecostal

congregations sprouted around the country.

Health and health-care

Health care in Zambia is provided by the Government

institutions, churches under the Churches Health Association of

Zambia (CHAZ), the mining companies, some parastatal

organizations, private clinics and the traditional sector. The

structure of public Health services run by the Government

comprises: Community Health Care (Health posts), Health

Centres, Level one Hospitals, Level Two Hospitals and Level

Three Hospitals.

By 1991, the quality of Health service delivery had

deteriorated mainly due to increased demand for health

services arising from rapid population growth and a declining

economy. This compromised the government’s ability to

provide quality health care. The Government was unable to

provide adequate medical supplies, equipment and

infrastructure for optimal provision of basic health care

services. At the same time the epidemiological situation of the

country was also rapidly changing and getting compounded by

the HIV/AIDS pandemic.

44

In an effort to improve the quality and provision of health care

delivery, the Zambian government introduced the Health

Reforms in 1992. The key tenets of the reforms were

decentralisation of health services planning and provision to

the district level and a focus on preventive rather than curative

care. This innovation also culminated into the introduction of

an “Essential Health Care Package”, which defined key

interventions that the public health system should provide

within the available resources. The reforms also emphasized

the importance of community participation in the management

of health services and coordination of donor support in the

framework of sector wide approach involving pooling of

resources to finance a jointly approved health sector plan.

Between 1992 and 2002, some health indicators have shown a

marked decline in service delivery and quality of care while

others have registered a marginal improvement. The Maternal

Mortality Rate has increased from 649 deaths per 100,000 live

births in 1996 to 729 deaths per 100,000 live births in 2002.

On the other hand, infant mortality and under five mortality

rate have declined from 109 and 197 per 1000 in 1996 to 95

and 168 per 1000 live births in 2002 respectively.

45

Table 1.1: Summary of Key Performance Indicators

Indicator 1992 1996 2002

Life Expectancy 45 46.8 51.8

Infant Mortality Rate per 1,000 107 109 95

Under 5 Mortality Rate per 1,000 191 197 168

Maternal Mortality Ratio per 100,000 N/A 649 729

HIV Prevalence Rate 23 20 15.6

Source: Zambia Demographic Health Survey 2001/2002

Factors that contributed to the decline of some health

indicators include the HIV/AIDS pandemic, brain drain, poor

state of health facilities, inadequate drugs and medical

supplies and high poverty levels.

Disability in Zambia

According to the 2000 Census of Population and Housing,

Zambia’s defacto9 population then stood at 9,337,425. From

this, 256,690 were persons with disabilities (representing

approx. 2.7% of the total population) out of which 53% were

male and 47% were female. The census also revealed that

Physical disability was the most common disability in Zambia

comprising of 35.2% of the total disability population followed

by the Partially Sighted at 27.4%, Hard of Hearing at 11.2%,

9 Defacto population as compared to dejure population is the usual household members and visitors who spent the census night at that household excluding foreign diplomatic personnel accredited to Zambia and Zambian nationals accredited to foreign embassies and their families, Zambian migrant workers and students

46

the Mentally ill at 7.4%, the Deaf at 5.7%, the Mentally

Retarded at 4.9%, the Blind at 4.8% and the ex-mental

patients at 3.3%.

It was also reported that the major causes of disability in

Zambia include, Malnutrition, Accidents, Infectious Diseases,

Non-Infectious Diseases, Congenital Diseases (acquired at

birth or during uterine development, as a result of either

hereditary or environmental inf luences) and other factors

(including ageing).

Although disability issues are inter-ministerial with all

government ministries expected to play their respective roles,

the Ministry of Community Development and Social Services

(MCDSS), is implicitly responsible for disability issues

supported by the Zambia Agency for Persons with Disabilities

(ZAPD), a government institution which was established under

the Persons with Disabilities Act No. 33 of 1996. This is further

augmented by the National Trust for the Disabled (NTD)

established under the same piece of legislation.

Other stakeholders in disability issues include, but are not

limited to the following:

Self-help organisations

There are more than 40 self help organisations of and for

persons with disabilities in Zambia some of which include:

47

Zambia Federation of the Disabled (ZAFOD and umbrella organisation)

Zambia National Federation of the Blind (ZANFOB)

Zambia National Association of the Physically Handicapped (ZNAPH)

Zambia National Association of Disabled Women (ZNADWO)

Zambia National Association of the Hearing Impaired (ZNAHI)

Zambia National Association of the Deaf (ZNAD)

Zambia National Association of the Partially Sighted (ZNAPS)

Zambia Association for Children and Adults with Learning Disabilities (ZACALD)

New Foundation of the Blind in Zambia (NEFOBZA)

Zambia Association of Parents for Children with Disabilities (ZAPCD)

Zambia Association on Employment for Persons with Disabilities (ZAEPD)

Parents Partnership Association on Children with Special Needs (PPACSN)

Disabled Entrepreneurs Association of Zambia (DEAZ)

Disability Rights and Independent Living Trust (DRILTZ)

Mental Health Association of Zambia (MHAZ)

Mental Health Users Network of Zambia (MHUNZA)

Disability Initiatives Foundation (DIF)

Zambia National Library and Cultural Centre for the Blind (ZNLCCB)

Zambia National Association of Sign Language Interpreters (ZNASLI)

Association of Sign Language Interpreters in Zambia (ASLIZ)

Disacare Wheelchair Centre Trust

Zambia Epilepsy Association

Albinos Association of Zambia

48

Bilateral Organisations

The known bilateral organisations that have been active in

supporting disability organisations in Zambia include among

others JICA, SIDA, NORAD, FINNIDA, DFID and some

embassies and High Commissions such as those of the United

States, Finnish, Swedish, Danish, Germany, Irish and the

British.

Multilateral Organisations

Only two multilateral organisations have been active in

supporting disability programmes namely:

International Labour Organisation (ILO)

European Union (EU)

International & Local Organisations

International & local organisations, based in & outside Zambia,

include among others:

Action on Disability and Development (ADD)

Finnish Association on Mental Retardation (FAMR)

Leonard Cheshire Homes International

Zambia National AIDS Network (ZNAN)

Sight Savers International Zambia

KEPA Zambia

POWER International

SINTEF Health Research

Norwegian Federation of the Disabled (FFO)

Churches

49

Zambian Disability policy

The rights of persons with disabilities are protected by a

combination of special and general legislation. The judicial

mechanism adopted to protect the rights of persons with

disabilities is due process (legal remedy through the courts).

Administrative and other non-judicial mechanisms include a

governmental body (administrative).

There is only one piece of legislation on disability namely the

Persons with Disabilities Act No. 33 of 1996, which also

ushered in the Zambia Agency for Persons with Disabilities.

However, since its enactment, the Act hasn't been enforced

and its violations are rarely recognized due to mainly

ignorance, among the various stakeholders, of what it entails.

Also, in 2002, the Ministry of Community Development and

Social Services (MCDSS) produced a National Policy on

Disability but no Implementation Plan has been put in place to

realize its objectives. However, issues of persons with

disabilities have been included in the Fifth National

Development Plan (FNDP) 2006 to 2010 but allocation of

financial resources to those issues has been significantly

inadequate.

Legal provisions mandate the representatives of persons with

disabilities to participate in policy-making and to work with

Governmental institutions. Organizations of persons with

disabilities are sometimes consulted when laws and regulations

with a disability aspect are being prepared. Consultations

50

mainly take place at the national level with the exception of

the current Draft Republican constitution where different

stakeholders (including persons with disabilities) at different

levels were consulted.

However, in most situations persons with disabilities have

participated to a very limited extent in the formulation of other

general/mainstream pieces of legislation. Organizations of

persons with disabilities have the role to advocate rights and

improved services, mobilize persons with disabilities, identify

needs and priorities, participate in the planning,

implementation and evaluation of services and measures, and

contribute to public awareness.

51

2 Concepts

(Arne H Eide, ME Loeb)

Disability and living conditions are core concepts to the study

presented in this report. Our own understanding of these

concepts has progressed in unison with some interesting

developments in recent years. Both concepts are open to

interpretation and can be perceived in different ways. In

addition, it is important to be aware that the understanding

and application of these concepts will vary from one socio-

cultural context to another (Whyte & Ingstad, 1998). As the

concepts are important for the design of the study as well as

for the analyses and understanding of results, some

clarifications are necessary.

2.1 Disability

During the 1970s there was a strong reaction among

representatives of organisations of persons with disabilities

and professionals in the field of disability against the then

current terminology. The new concept of disability was more

focused on the close connection between the limitations

experienced by individuals with disabilities, the design and

structure of their environments and the attitude of the general

population. Recent development has seen a shift in

52

terminology and an increasing tendency towards viewing the

disability complex as a process (the disablement process),

involving a number of different elements on individual and

societal levels.

INTERNATIONAL CLASSIFICATION OF FUNCTIONING,

DISABILITY AND HEALTH (ICF)

The adoption of the World Health Organisation’s International

Classification of Functioning, Disability and Health (WHO,

2001) represents a milestone in the development of the

disability concept. From 1980 and the first classification (The

International Classification of Impairments, Disabilities and

Handicaps (ICIDH) (WHO, 1980)), a 20 year process has

resulted in shift in the WHO conceptual framework from a

medical model (impairment based) to a new scheme that

focuses on limitations in activities and social participation.

Although not representing a complete shift from a strictly

medical to a strictly social model, the development culminating

with ICF nevertheless implies a much wider understanding of

disability and the disablement process.

53

Figure 1 The ICF Model of Functioning, Disability and Health

(WHO, 2001)

Health Condition

(disorder/disease)

Body functions Activity Participation

and structure

Environmental Personal

factors factors

APPLICATION OF THE ICF IN THE CURRENT STUDY

The conceptual development from ICIDH (WHO, 1980) to ICF

is important here as this shift also has a methodological

parallel. The classification forms a basis for the collection of

statistical data on disability. The current study does not

represent an application of ICF, and it has not been the

intention to test the new classification as such. Rather, the

study is inspired by the conceptual basis for ICF and has

attempted to approach disability as activity limitations and

restrictions in social participation. This is pronounced in the

screening procedure and in the inclusion of a matrix on activity

limitations and social participation restrictions developed

54

particularly for this study. The current study does, none the

less, provide a unique possibility for applying some core

concepts from the ICF and testing some aspects of the model

statistically10.

An understanding of disability as defined by activity limitations

and restrictions in participation within a theoretical framework

as described in Figure 1 underlies this study. The term

“disability” is, with this in mind, a problematic concept since it

refers to, or is associated with, an individualistic and

impairment-based understanding. As a term, it is nevertheless

applied throughout this text since it is regarded as a commonly

accepted concept, and its usage is practical in the absence of

any new, easy to use terminology in this sector.

ENVIRONMENTAL FACTORS

Environmental factors are important elements in the ICF

model, and it is fundamental to the present understanding of

disability that activity limitations and restrictions in

participation are formulated in the exchange between an

individual and his/her environment. In the current study,

environmental factors are included as a separate dimension in

the questionnaire (Appendix 6). It is however acknowledged

that studies like the current one traditionally focus on the

individual and that this is also the case here.

10 Will be published separately

55

2.2 Living conditions

The concepts of “level of living” or “living conditions” have

developed from a relatively narrow economic and material

definition to a current concern with human capabilities and

how individuals utilise their capabilities (Heiberg & Øvensen,

1993). Although economic and material indicators play an

important role in the tradition of level of living surveys in the

industrialised countries, an individual’s level of living is

currently defined not so much by his or her economic

possessions, but by the ability to exercise choice and to affect

the course of his or her own life. The level of living studies

have been more and more concerned with such questions and

are currently attempting to examine the degree to which

people can participate in social, political and economic

decision-making and can work creatively and productively to

shape their own future (UNDP, 1997).

A number of core items can be regarded as vital to any level of

living study: Demographics, health, education, housing, work

and income. Other indicators may comprise use of time, social

contact, sense of influence, sense of well being, perceptions of

social conflict, access to political resources, access to services,

social participation, privacy and protection, etc. The choice of

which indicators to include will vary according to the specific

requirements of each study and the circumstances under

which the studies are undertaken.

56

2.3 Disability and living conditions

Research on living conditions is comparative by nature.

Comparison between groups or monitoring development over

time within groups and populations are often the very reasons

for carrying out such studies. The purpose is thus often to

identify population groups with certain characteristics and to

study whether there are systematic differences in living

conditions between groups – or to study changes in living

conditions within groups over time and to compare

development over time between groups. Population sub-

groups of interest in such studies are often defined by

geography, gender, age – or the focus of the current research,

i.e. people with disabilities vs. non-disabled. Research in high-

income countries has demonstrated that people with

disabilities are worse off along the whole spectre of indicators

concerning living conditions, and that this gap has also

remained during times with steady improvement of conditions

for all (Hem & Eide, 1998). This research-based information

has been very useful for advocacy purposes, for education and

attitude change in the population, as well as for planning and

resource allocation purposes.

These same patterns of systematic differences are also at work

in low-income countries, as has been documented in our

studies in Namibia (Eide, van Rooy & Loeb, 2003), Zimbabwe

(Eide, Nhiwatiwa, Muderezi & Loeb, 2003) and Malawi (Loeb,&

Eide, 2004).

57

When the stated purpose of the research is to study living

conditions among people with disabilities, it is essential, at the

onset, to decide upon a working definition of disability in order

to identify who is disabled and who is not. This is a more

complex issue than choosing between a “medical model” on

one side and a “social model” on the other. How this is

understood and carried out has major impact on the results of

research, and consequently on the application of results (refer

to chapter 3.1 on the disability concept). The ICF may to

some extent be viewed as an attempt to combine a broad

range of factors that influence the “disability phenomena”.

The authors behind this research report support the idea that

disability or the disablement process is manifested in the

exchange between the individual and his/her environment.

Disability is thus present if an individual is (severely) restricted

in his/her daily life activities due to a mismatch between

functional abilities and demands of society. The role of the

physical and social environment in disabling individuals has

been very much in focus during the last 10 – 20 years with the

adoption of the Standard Rules, the World Programme of

Action, and lately the ICF (WHO, 2001). It is logical that this

development is followed by research on the mechanisms that

produce disability in the meeting between the individual and

his/her environment.

It is true that studies of living conditions among people with

disabilities in high-income countries have been criticised for

58

not evolving from an individualistic perspective. Data are

collected about individuals and functional limitations are still in

focus. It is a dilemma that this research tradition has not yet

been able to reflect the relational and relative view on

disability that most researchers in this field would support

today. While we agree to such viewpoints, we nevertheless

argue that a “traditional” study is needed in low-income

countries to allow for a description of the situation as well as

comparing between groups and over time. In high-income

countries such studies have shown themselves to be powerful

tools in the continuous struggle for the improvement of living

conditions among people with disabilities. In spite of an

individualistic bias in the design of these studies, the results

can still be applied in a critical perspective on contextual and

relational aspects that represents important mechanisms in

the disablement process.

2.4 Combining two traditions and ICF

The design that has been developed and tested here aims at

combining two research traditions: studies on living conditions

and disability studies11. Pre-existing and validated

questionnaires that had been used in Namibia (on general

living conditions – NPC, 2000) and in South Africa (on

disability – Schneider et. al., 1999) were combined and

adapted for use in the surveys. A third element, on activities

and participation, was included to incorporate the conceptual

developments that have taken place in connection with

11 By “disability studies” we understand a broad specter of different studies that have generated knowledge about the situation of people with disabilities.

59

development of ICF. By combining the two traditions, a

broader set of variables that can describe the situation for

people with disabilities are included as compared to the

traditional disability statistics. Secondly, a possibility is

established for comparing the conditions of disabled people

(and households with disabled people) with non-disabled (and

households without any disabled members). It is argued that

such comparative information is much more potent in the

struggle for improvement of the situation for disabled people,

reflecting the developmental target for the current study.

60

3 Living conditions among people with activity limitations in low income countries

(AH Eide, ME Loeb)

According to UN estimates, the population of disabled people

in the world is placed at somewhere between 225 and 350

million people. This is based on a 10% estimated prevalence

rate (WHO, 1981) that is intended to cover severe, moderate

and mild physical, mental or sensory impairments. The large

majority of disabled people live in developing or low-income

countries12, very often living without optimal technical, medical

or social support that could have improved their level of living

conditions considerably. Disabled people are often

marginalised and belong to the poorest segments of society

(UN, 1996).

The situation for people with disabilities in low-income

countries is of concern for Governments, Non-Governmental

Organisations (NGO), as well as for the International

Community. Their rights have been the subject of much

attention in the United Nations and other international

organisations over a long period of time. The International

12 Low-income country will be applied throughout this report to cover terms like developing country, non-industrialised country etc. Likewise, high-income country is applied to cover developed country, industrialised country etc.

61

Year of Disabled Persons (1981) and the United Nations

Decade of Disabled Persons (1983 – 1992) culminated in the

World Programme of Action Concerning Disabled Persons (UN,

1993). The Programme emphasises the right of persons with

disabilities to the same opportunities as other citizens and to

an equal share in the improvements in living conditions

resulting from economic and social development. In 1993, the

General Assembly approved The Standard Rules on the

Equalisation of Opportunities for Persons with Disabilities

(Resolution 48/96) (UN, 1994), setting specific targets and

requesting a strong moral and political commitment on behalf

of States to take action for the equalisation of opportunities for

persons with disabilities.

Knowledge about the current situation is important as a tool

for advocacy and practical action, when agreeing on

acceptable standards, setting priorities and planning for

required improvements. Without the necessary information

and knowledge, Governments, NGOs and International

Organisations are more or less forced to work arbitrarily on a

hit or miss basis. Under such circumstances resources cannot

be distributed and utilised in a rational, efficient manner.

Unfortunately, the lack of knowledge is clearly most

pronounced in developing countries with scarce resources and

thus with the greatest need for cost-effective strategies that

would improve the living conditions among people with

disabilities.

62

Both the World Programme of Action and the Standard Rules

comprise explicit formulations that reflect the need for

information, data collection and research on the situation of

disabled people, and particularly so in developing countries.

According to the World Programme of Action, member states

should develop a programme of research on the causes, types

and incidence of impairment and disability, economic and

social conditions of disabled persons as well as on obstacles

that affect their lives. Such formulations are also found in the

Disability Policy of Namibia13, South Africa14, Malawi15, and

Zambia16 among others.

3.1 Disability data in low-income countries

In recent decades, the collection of data and the production of

statistical information on topics relevant to rehabilitation and

disability have proliferated (UN, 1996). Rehabilitation

programmes, national censuses and survey programmes

within different Government sectors are producing increasing

amounts of information on impairments, disabilities and

handicaps. Needless to say, the bulk of this information is

produced in the industrialised countries. In addition, most of

the current statistical information is, unfortunately, produced

without the benefit of a common terminology or standard

procedures and guidelines. It is further claimed (UN, 1996)

13 MLRR (1997) National Policy on Disability. Windhoek, Ministry of Lands, Resettlement and Rehabilitation. 14 Office of the Deputy President. (1997) White Paper on an Integrated National Disability Strategy. Pretoria, Office of the Deputy President. 15 Malawi Government. National Disability Policy. Office of the Minister of State Responsible for Persons with Disabilities. December, 2006. 16 Zambian Government. Persons with Disabilities Act, No. 33 of 1996

63

that there are problems with the quality of existing data and

that quality problems are most pronounced in developing

countries.

The demand for quality statistics on persons with disabilities

has increased greatly in recent years following the

International Year of Disabled Persons (1981), the World

Programme of Action Concerning Disabled Persons, and the

Standard Rules on the Equalisation of Opportunities for

Persons with Disabilities. The World Programme of Action

specifically requested the United Nations to develop systems

for the regular collection and dissemination of information on

disability. The UN provides a web site as a step in

implementing this mandate. It provides a convenient statistical

reference and guide to the available data, specifically,

o national sources of data

o basic disability prevalence rates

o questions used to identify the population with disability.

3.1.1The problem of determining disability prevalence

Those interested in determining the extent of disability in a

population encounter a few major problems. One is deciding

upon an acceptable definition of disability. There is no

commonly accepted definition, no “neutral language” (Altman,

2001) and no standard test for disability that is constant from

one population or society to another.

64

A second major problem encountered by disability researchers

is the choice of instrument used to measure disability. That is:

what question(s) should one ask in order to capture the

proportion of disability in a population. In the past, many

African countries have reported disability prevalence rates well

under 5% (or below 5000 per 100 000 population). This is far

below the rates observed in some western countries where the

majority are over 10%, some even approaching 20%, see

Table 3.1). That is not to suggest that African rates should be

as high as, or higher than those reported in western societies

– but there is a real fear of under-reporting among African

countries.

Table 3.1 Prevalence (%) of disability in selected countries.

High-income countries Low-income countries Year % Year %

Canada 1991 14.7 Kenya 1989 0.7 Germany 1992 8.4 Namibia 1991 3.1

Italy 1994 5.0 Nigeria 1991 0.5 Netherlands 1986 11.6 Senegal 1988 1.1

Norway 1995 17.8 SouthAfrica

1980 0.5

Sweden 1988 12.1 Zambia 2000 2.7 Spain 1986 15.0 Kenya 1989 0.7

UK 1991 12.2 Zimbabwe 1997 1.9 USA 1994 15.0 Malawi 1983 2.9

65

Sources: Canada Statistics Canada - Selected characteristics of persons with

disabilities residing in households Germany Statistisches Bundesamt Wiesbaden, Population and labour

market survey Italy Instituto Nazionale di Statistica Netherlands Central Bureau of Statistics and Netherlands Institute for

Research on Social Welfare, Physical Disability Norway Statistics Norway - Survey of Level of Living Sweden Statistics Sweden Spain Encuesta Sobre Discapacidades, Deficiencias y Minusvalias UK Office of Population Censuses and Surveys USA United States Department of Health and Human Services,

National Center for Health Statistics Kenya Central Bureau of Statistics, Kenya Population Census Namibia Central Statistical Office, 1991 Population and Housing

Census Nigeria National Population Commission, 1991 Population Census Senegal Direction de la provision et de la statistique South Africa UNDP-ILO Report Zambia Central Statistical Office, Census of Population, Housing and

Agriculture *Zimbabwe Central Statistical Office, 1997 Inter-Censal Demographic

Survey Report Malawi National Statistical Office, Survey of Handicapped Persons,

Malawi, 1983 (1987)

Note: Each of these surveys used a different set of questions in order to identify persons with disabilities. For more information see: http://unstats.un.org/unsd/demographic/sconcerns/disability/disab2.asp*Zimbabwean data are derived from a separate report, and are not available on the above website.

Another source of disability prevalence rates is The Human

Development Report that has been published by the UNDP

since 1990. Included in the 1997 edition of the Report (UNDP,

1997) are estimates of the prevalence of disabilities as

percentages of the total population in selected countries.

According to this source, the prevalence of disability is 1.6% in

Zambia. Among the black population in South Africa

prevalence of disability (sight, hearing/speech, physical

disability and mental disability) has been estimated to 5.1%.

Two other studies from South Africa (coloured urban and black

66

rural communities) have reported prevalence rates of 4.4%

and 4.75% (Katzenellenbogen et. al., 1995; Concha and

Lorenzo, 1995). The national disability survey undertaken in

South Africa in 1998/99, a national representative survey of

10,000 households was carried out to determine the

prevalence of disabilities as well as describe the disability

experience as reported by disabled people or their proxy

reporters (Schneider et al., 1999). The focus of the survey was

on the “traditional” categories of impairments, and according

to this study, disability prevalence rates varied between 3.1%

and 8.9% among the selected South African provinces. The

recent Census in Namibia reported overall disability in the

country at 4.7% of the population (National Planning

Commission (NPC), 2003), while the studies on living

conditions found 1.6% of the sampled population in Namibia

(Eide, van Rooy & Loeb, 2003) and 2.9% of the sampled

population in Zimbabwe (Eide, Nhiwathiwa, Muderedzi & Loeb,

2003) as having disabilities. The Malawian survey of living

conditions among people with disabilities found disability

prevalence in the country to be 4.2% (Loeb, Eide, 2004).

3.1.2Comparability of disability statistics

As shown in the preceding table, many countries collect data

on disability but the prevalence rates derived from these data

vary greatly for a variety of reasons including:

o conceptual issues - disability as the result of an interaction

between the person with the disability and their particular

environment. Under these circumstances, disability is seen

67

as a non-static, complex phenomenon that can be

conceptualised in many ways, including at the level of the

body, the person, or the society.

o measurement issues - the questions used, their structure

and wording, and how they are understood and interpreted

by the respondents all affect the identification of the

persons with disabilities in data collection.

Another plausible explanation for the discrepancy between

low- and high-income countries may be found in an

assessment of disability prevalence along the time axis. It is

claimed that disability prevalence rates observed in the United

States (and other high-incomes, western countries) in the

1950's were of about the same order of magnitude as those

now observed in low-income countries; and that the rates we

see in, for example, African states represent a manifestation of

the delayed development of these countries (Judith E.

Heumann, World Bank Disability Advisor, personal

communication).

For these reasons, the observed differences among countries

in the disability prevalence rates (or percentages) reflect

conceptual and measurement differences, to varying degrees,

as well as "true" differences. While prevalence rates for the

African continent are consistently low, the methods that have

produced them vary dramatically and reinforce the need for a

standardised approach to an evolving disability phenomenon

68

that would allow for a more equitable comparison of

international measurements.

To achieve broader comparability among countries, much work

needs to be done to further develop classifications and

concepts, such as the International Classification of

Functioning, Disability and Health (ICF), as well as

measurement instruments to implement them in national

statistical efforts.

3.1.3Methodological Work on Disability Statistics

The United Nations Statistics Division (UNSD) publication

Guidelines and Principles for the Development of Disability

Statistics17 aimed at assisting national statistical offices and

other producers of disability statistics in improving the

collection, compilation and dissemination of disability data. The

document addresses methodological issues in the area of

disability by providing guidelines and principles related to data

collection through surveys and censuses and also on the

compilation, dissemination and usage of data on disability. The

publication builds on the Manual for the Development of

Statistical Information for Disability Programmes and

Policies,18 and also on the section on disability in the Principles

17 Guidelines and Principles for the Development of Disability Statistics (United Nations publication, Sales No. E.01.XVII.15) 18 Manual for the Development of Statistical Information for Disability Programmes and Policies (United Nations publication, Sales No. E.96.XVII.4).

69

and Recommendations for Population and Housing Censuses,

Revision 1.19

The Guidelines recommend that disability be measured within

the conceptual framework of the WHO International

Classification of Functioning, Disability and Health – ICF (World

Health Organisation, Geneva, 2001). The ICF conceptual

framework provides standardised concepts and terminology

that can be used in disability measurement instead of the

unstandardised and often pejorative terms used in many

national studies on disability. The use of a common framework

also contributes to greater comparability of data at the

national and international levels, thereby increasing the

relevance of the data to a wide set of users.

3.1.4International initiatives on disability measurement

The measurement of disability for statistical reporting was the

focus of the International Seminar on the Measurement of

Disability held in New York 4-6 June 2001 and sponsored the

by UNSD, UNICEF, Eurostat and the Centres for Disease

Control and Prevention (CDC) of the United States. The

Seminar, which brought together experts in disability

measurement from developed and developing countries

reviewed and assessed the current status of methods used in

population-based data collection activities to measure

disability in national statistical systems, and agreed to

establish the Washington Group on Disability Statistics (WG) to

19 Principles and Recommendations for Population and Housing Censuses, Revision 1 (United Nations publication, Sales No. E.98.XVII.8).

70

implement the Seminar’s recommendations for further work to

improve the measurement of disability.

The objectives of the WG were defined as: (1) To guide the

development of a small set(s) of general disability measures,

suitable for use in censuses, sample-based national surveys,

or other statistical formats, which will provide basic necessary

information on disability throughout the world; (2) To

recommend one or more extended sets of survey items to

measure disability or principles for their design, to be used as

components of population surveys or as supplements to

speciality surveys; and (3) To address the methodological

issues associated with the measurement of disability

considered most pressing by the WG participants.

The WG has also discussed various methodological issues in

disability measurement including the purposes of

measurement, the ICF model, the UN standard disability

tables, global measures of disability, the relationship of global

measures to the ICF, the confounding function of assistive

device use, cultural practices that influence the nature of the

environment or proscribe participation, cultural issues that act

as barriers to collecting data and cross-national comparability

of information. Further information about the Washington City

Group can be accessed on their website:

http://www.cdc.gov/nchs/citygroup.htm.

71

The Statistics Division of the United Nations has established

the Disability Statistics Database for Microcomputers

(DISTAT). DISTAT contains disability statistics from national

household surveys, population censuses, and population or

registration systems. The 1990-edition of the Disability

Statistics compendium covers 55 nations, among them a few

African countries (UN, 1990). The United Nations Statistical

Division will, in 2005, initiate a systematic and regular

collection of basic statistics on human functioning and

disability by introducing a disability statistics questionnaire to

the existing Demographic Yearbook data collection system

(UN, 2003). For more information about this system go to the

following web-site:

http://unstats.un.org/unsd/demographic/sconcerns/disability/

default.htm.

Most countries in Africa, Zambia included, have carried out and

published population censuses that provide some information

on living conditions. Unfortunately, information on disabilities

and the living situation of people with disabilities have rarely

been included. The population censuses after the year 2000

are, however, expected to cover disability (UN, 1997),

following the revision of the census recommendations20. In

both Namibia (see above) and Zimbabwe (Census 2002,

20 National Censuses have recently been carried out in both Namibia and Zimbabwe (2002). In both countries, screening questions influenced by an activity based understanding of disability have been included. At the time of writing this report, no results have however been reported from the two censuses.

72

Preliminary Results Summary, Central Statistical Office, 2003),

a few questions about disability have now been included.

Although the progress made in this field is quite substantial,

data on disability are still infrequent and are significant by

their absence in development reports. A further point to be

mentioned here is that the international monitoring system

developed by the United Nations will largely be limited to a

small number of standardised indicators intended for

international comparison. More comprehensive and culturally

adapted studies of living conditions will be necessary in

developing countries in order to establish a knowledge basis

that can guide development of policy and practice.

3.1.5Methodological considerations in measuring prevalence

Screening for disability

The issue of disability prevalence has been discussed in

several workshops, notably at a Workshop on Disability

Statistics for Africa (Kampala, 10-14 September 2001)

organised by the UN Statistical Office and attended by

representatives from 11 African nations. Among the delegates

at this workshop there was general agreement that the

prevalence rates reported for African countries uniformly

reflected the more severe cases of disability in the population

– and were in fact not dissimilar to rates for severe cases of

disability reported in western countries. It was felt, however,

that the reported disability figures failed to capture the milder

to more moderate degrees of disability or activity limitation/

participation restriction. The cause of this particular omission

73

may be simply that individuals do not acknowledge a limitation

if they are unaware of the possibility of improving the situation

with relatively simple technical aids – or, alternatively, the

reason may be linked to the association between "supply and

demand" i.e. that fewer demands placed by society on the

individual results in fewer counted ‘disabilities’.

In line with the earlier impairment-based model of disability

(ICIDH, 1980), enquiring after specific impairments has been a

common approach to screening for disabilities in the censuses

of many low-income countries. For example, the questions

used to identify persons with disabilities in the 1990 Zambian

census were as follows:

Is there anyone in this household who is:

Blind Yes/No Deaf/Dumb Yes/No Crippled Yes/No Mentally retarded Yes/No

The 1990 census produced a disability prevalence rate of 0.9%

while results from the 2000 census placed disability at 2.7%.

The 2000 census made use of questions that are more

indicative of an individual’s limitations in carrying out daily

activities, due to long-term physical, mental or health

problems.

The United Nations Statistical Division provides additional

examples on its website:

http://unstats.un.org/unsd/demographic/sconcerns/disability/

disab2.asp (UN, 2003).

74

The approach used in the Zambian Living Condition Survey

presented here relies on the work of the Washington Group on

Disability Statistics (WG – see above). The screening questions

used reflect an understanding of disability in accordance with

the ICF (WHO, 2001).

The next questions ask about difficulties you may have doing certain activities because of a HEALTH PROBLEM

No Some Alot Unable

1 Do you have difficulty seeing, even if wearing glasses?

1 2 3 4

2 Do you have difficulty hearing, even if using a hearing aid? 1 2 3 4

3 Do you have difficulty walking or climbing steps? 1 2 3 4

4 Do you have difficulty remembering or concentrating? 1 2 3 4

5 Do you have difficulty (with self-care such as) washing all over or dressing? 1 2 3 4

6 Because of a physical, mental, or emotional health condition, do you have difficulty communicating, (for example understanding or being understood by others)?

1 2 3 4

For the purposes of this report and the analyses carried out, a

person with a disability is anyone who has some difficulty with

at least two activities or a lot of difficulty/unable to do any one

activity above.

Based on the above criteria, we found in this survey that

prevalence varied by province from 7.3% in Luapula to 22.2%

in Western province, with a mean national prevalence rate of

13.3% (see Appendix 2). This current rate reflects the changes

75

in the understanding and approach to disability that has been

manifested over the past 25-30 years. In addition, it is

possible to examine disability prevalence by severity according

to the responses to the six screening questions; 2.4% of

registered disabilities were of the most severe type (unable to

do the activity), 10.4% experienced at least a lot of difficulties

doing at least one of the activities and 14.4% experienced at

least some difficulty doing at least one of the activities. In

addition, 6.1% experienced at least some difficulty doing more

than one activity, i.e. multiple impairments. (Note: these

percentages are not additive.)

3.2 Relevant studies in Zambia

While very little relevant disability research has been

conducted in Zambia, the Central Statistical Office has been

collecting disability data in censuses from 1969. As mentioned

above, the most recent (2000) census placed the rate of

disability in the population at 2.7%. Based on the

documentation available, it is clear that Zambia, and the CSO

in particular, is actively incorporating the definitions and

methodologies as proposed by the WG and others.

In addition to disability, both poverty and HIV/AIDS are

becoming recurring and visible themes among publications

emanating from the region. In the future it will become

increasingly important to include the disability dimension in all

research that touches on these two topics.

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4 Design and Methods

(Goodson Sinyenga, CSO)

4.1 Scope of the survey

The scope of the survey in terms of topics covered is to a large

extent guided by similar study that was conducted in Malawi in

2002. A continuous process of consultation with key

stakeholders has helped shape up the scope of the survey. As

such, the survey only includes agreed upon topics of policy

relevance. In broad terms, the survey includes: -

(i) A set of core living conditions indicators to be monitored

regularly

(ii) A detailed assessment of activity limitations faced by

people with disabilities.

To achieve the above stated tasks, the survey will employ 2

survey instruments for data collection namely, the household

questionnaire and a detailed Activity Limitation questionnaire

for those members of the households identified with such

limitations. The generic household questionnaire will cover the

following topics: -

77

Demography and Disease burden

Education and Literacy

Economic activities of household members

Reproductive Health of Females aged 12 to 49 years

Household amenities and housing conditions

Household access to facilities

Household asset ownership including land

Household Income and it’s main source

Household food production

Household monthly Expenditure and rankings

Death in the households

The detailed Activity Limitation questionnaire will cover the

following topics: -

Activity Limitations and Participation restrictions

Environmental factors

Awareness, need and receipt of services

Education and employment

Assistive devices and technology

Accessibility in the home and surroundings

Inclusion in family and social life

Health and general well-being

4.2 Sample Design and Coverage

The survey is designed to cover 350 Standard Enumeration

Areas (SEAs) across the 8 strata found in 9 provinces or

approximately 7,000 non-institutionalised private households

residing in the rural and urban areas of Zambia. The survey

will be carried out for a period of 50 - 60 days using a cross

78

sectional sample. This sample is nationally and regionally

efficient and is expected to yield reliable estimates at

provincial, location and national levels.

4.3 Sample Size Determination

For the majority of human population based studies, the

minimum sample requirement assuming Simple Random

Sampling (SRS) is 400 observation units. However, this

sample size does not take into account the complexity of the

sample design. Adjusting the SRS sample with an appropriate

design effect factor as well as response rate yields the ideal

sample. In Zambia, the design effect factors for common

proportions vary from 1.4 to about 2.5. This survey has

adopted the factor of 2 to estimate the sample requirement for

a province. Therefore, the ideal sample size would be around

7,000 households countrywide or 800 observational units per

province (See Appendix 3 for sample size determination).

4.4 Sample Stratification and Allocation

The sampling frame used for the survey will be developed from

the 2000 census of population and housing. The Census frame

is administratively demarcated into 9 provinces, which are

further divided into 72 districts. The districts are further

subdivided into 155 constituencies, which are also divided into

wards. Wards nest Census Supervisory areas, which in turn

nest Standard Enumeration areas (SEAs). For the purposes of

this survey, SEAs constituted the ultimate Primary Sampling

Units (PSUs). All the SEAs and their corresponding households

are further stratified into either rural or urban areas.

79

In order to have equal precision in the estimates in all the

zones and at the same time take into account variation in the

sizes of the Zones, the survey will adopt the Square Root

sample allocation method, (Lesli Kish, 1987). This approach

offers a better compromise between equal and proportional

allocation methods in terms of reliability of both combined and

separate estimates. The table below shows the distributions of

the Primary Sampling Units (PSUs) or SEAs to stratum

(location) and provinces. The sample allocation to the explicit

rural-urban strata has been approximately proportional.

The Square Root Optimal Method takes the following form;

Where:

Sh= Desired domain sample

W2= Relative domain weight

H-2=Number of Domains of study

80

Table 4.1: Sample allocation table

Province Optimal (Ideal)

Pro-portional Equal

Modified

(Final) Rural Urban

Central 37 36 39 36 24 12

Copperbelt 48 56 39 48 14 34

Eastern 42 46 39 42 34 8

Luapula 33 28 39 34 26 8

Lusaka 44 50 39 44 12 32

Northern 41 44 39 42 34 8

N/western 31 20 39 30 22 8

Southern 40 43 39 42 30 12

Western 33 27 39 32 24 8

Total 350 350 350 350 220 130

4.5 Sample Selection

The survey will employ a two-stage stratified cluster sample

design whereby during the first stage, 350 SEAs will be

selected with Probability Proportional to Estimated Size (PPES)

from all the 18 strata across the 9 provinces (Refer to table

above). The size measure will be taken from the frame

developed from the 2000 census of population and housing.

During the second stage, 20 households will be systematically

selected from total number of households expected to be

residing in the selected SEAs. For the purposes of this survey,

half of the households will be those identified with persons

81

with activity limitations. The survey is designed to provide

reliable estimates at provincial, location and national levels.

4.6 Selection of Standard Enumeration Areas (SEAs) or PSUs

The SEAs in each stratum will be selected as follows:

(i) Calculate the sampling interval (I) of the stratum, in this

case the Rural-Urban stratum.

I =

Where:

= is the total stratum size

= is the number of SEAs allocated to the stratum

(ii) Calculate the cumulated size of the cluster (SEA)

(iii) Calculate the sampling numbers R,R+I,R+2I,…,R+(A-1)I,

where R is the random start number between 1 and I.

(iv) Compare each sampling number with the cumulated

sizes.

The first SEA with a cumulated size that was greater or equal

to the random number was selected. The subsequent selection

of SEAs was achieved by comparing the sampling numbers to

the cumulated sizes of SEAs.

82

4.7 Selection of Households

The survey will commence by listing and stratifying all the

households in the selected SEAs into the activity limitation and

non-activity limitation strata. For the purposes of the survey, a

maximum of 10 households will be selected from each

stratum, yielding a cluster take (Bopt) of 20 households.

The selection of households from the 2 strata will be preceded

by assigning fully responding households sampling serial

numbers. The circular systematic sampling method will then

be employed to select households. The method assumes that

households are arranged in a circle (G. Kalton, 1983) and the

following relationship applies:

Let N = nk,

Where:

N = Total number of households assigned sampling serial

numbers in a stratum

n = Total desired sample size to be drawn from a stratum in

an SEA

k = The sampling interval in a given SEA calculated as k=N/n.

4.8 Organisation of the Survey

The survey shall be implemented by 9 teams of roughly 4 Data

collectors, 2 drivers and 1 Supervisors. In addition, the survey

will be coordinated by the Field Coordinator assisted by 5

Investigators from INESOR and CSO (Appendix 4).

83

4.9 Data Collection

Data collection will be conducted by way of personal interviews

using 2 semi-structured questionnaires. The first survey

instrument will be used to collect general living conditions data

pertaining to the household being enumerated. The second

questionnaire will be employed to collect detailed information

from household members identified with various activity

limitations and disabilities. In addition to these instruments, a

listing form will initially be used to list all households in the

selected SEA into the 2 explicit strata.

4.10 Estimation Procedure

4.10.1 Sample weights

Due to the disproportionate allocation of the sample points to

various strata, sampling weights will be required to correct for

differential representation of the sample at national and sub-

national levels. The weights of the sample are in this case

equal to the inverse of the product of the two selection

probabilities employed above.

Therefore, the probability of selecting an SEA will be calculated

as follows:

84

Where:

= the first selection probability of SEAs

= The number of SEAs selected in stratum h

= The size (in terms of the population count) of the ith

SEA in stratum h

= The total size of the stratum h

The selection probability of the household will be calculated as

follows:

Where:

= the second selection probability of the household

= the number of households selected from the ith SEA of h

stratum

= Total number of households listed in a SEA

Therefore, the SEA specific sample weight will be calculated as

follows:

85

Wi, which is the inverse of the product of the 2 selection

probabilities, is called the PPS sample weight. Since there will

be 2 strata in every selected SEA, the PSU selection probability

will have to be multiplied with separate stratum specific

household selection probabilities. Therefore, the number of

weights in each SEA will be 2.

4.10.2 Estimation Process

In order to correct for differential representation, all estimates

generated from the survey data will be weighted expressions.

Therefore, if yhij is an observation on variable Y for the hth

household in the ith SEA of the jth stratum, then the estimated

total for the jth stratum is expressed as follows:

Where:

YjT = the estimated total for the jth stratum

i = 1 to aj: the number of selected clusters in the stratum

h = 1 to nj: the number of sample households in the stratum

The total estimate for the 18 rural-urban strata will be

obtained using the following estimator:

YT =

86

Where:

YT = the national total estimate

j = 1 to mj: the total number of strata (In this case mj=18)

4.11 Data Processing and Analysis

The data from the survey will be entered, processed and

analysed using the Statistical Package for Social Sciences

(SPSS). Data entry will be done centrally at INESOR/CSO

offices.

4.12 Expected Deliverables

Upon completion of data entry, various SPSS data sets will be

created and cleaned based on the key themes of the study. In

order to ensure data integrity, data cleaning will involve

backfilling missing records and values and removal of duplicate

cases that may arise during data entry. In short ZAFOD will be

expected to submit to SINTEF data sets with very minimum

levels of non-sampling errors.

A fully developed weight file will also need to be submitted to

SINTEF for use when estimating population totals.

87

5 Results

(ME Loeb)

The results are presented in two sub-chapters:

- Results from the study on level of living conditions,

comparing individuals with/without disabilities and

households with/without disabled persons; and

- Results from the detailed disability survey that specifically

addresses the situation of persons identified with

disabilities. This section includes a separate analysis of

questions dealing with activity limitations and participation

restrictions.

Particular care has been taken during analyses to control for

both gender and regional (provincial) differences. Whenever

these potential confounders have revealed significant

differences these are commented in the text, otherwise not.

Table 5.1 provides an overview of number of households and

individuals included in the data collection.

88

Table 5.1 Number of households and individuals in the study

Number of:

Source: Households Individuals Persons with disabilities

Households having a person with disability 2885 15210 2898

Households without a person with disability (Controls) 2866 12979 192*

Total 5751 28189 3090

*192 individuals were identified in “control” households as having a disability. These households remain as “controls” and the individuals identified are not included in the detailed analysis of persons with disabilities. They are however included in the Living condition survey as disabled.

5.1 Results from the study on level of living conditions

Mean sizes of households with and without disabled persons

are presented in Table 5.2.

89

Table 5.2 Mean household size

Disabled family member:

Households

with

Households

without significance

Province: Mean size Mean size t df p

Copperbelt 5.2 4.7 2.9 769 0.004

Central 5.0 4.1 6.4 693 < 0.001

Eastern 5.3 4.4 4.3 694 < 0.001

Lusaka 4.4 3.7 4.7 697 < 0.001

Northern 6.0 5.0 3.2 289 0.002

Luapula 5.3 4.9 2.2 568 0.029

North Western 6.1 5.1 5.2 601 < 0.001

Western 5.5 4.7 3.8 640 < 0.001

Southern 5.3 4.5 4.4 782 < 0.001

Total 5.3 4.5 11.9 5749 < 0.001

Analyses revealed that, regardless of geographic region,

households having at least one disabled household member

were significantly larger than those control households without

a disabled family member.

Mean ages of permanent family members of households with

and without disabled persons are presented in Table 5.3.

90

Table 5.3 Mean age of household

Disabled family member:

Households

with

Households

without significance

Province: Mean age Mean age t df p

Copperbelt 25.7 24.0 2.4 731 0.017

Central 22.5 24.0 -1.6 689 NS*

Eastern 25.4 25.1 0.2 595 NS

Lusaka 23.8 23.4 0.7 662 NS

Northern 25.1 21.8 2.2 244 0.031

Luapula 26.3 23.6 2.4 494 0.016

North Western 23.3 25.0 -1.6 524 NS

Western 29.1 24.4 4.1 593 < 0.001

Southern 23.2 21.8 2.0 770 0.045

Total 24.8 23.7 3.4 5318 0.001

*NS: not statistically significant

Overall, and with few exceptions geographically, the mean age

of households with a disabled member is signif icantly higher

than those households without disabilities regardless of

geographical region.

Concerning gender distribution, 49.8% (N = 7572) of the

members in households with disabled people were females,

whereas the corresponding f igures for the control households

91

was 50.7% (N = 6583). This difference between the two

groups is not statistically significant.

Table 5.4 Gender, household type and Region

Disabled family member:

Households with Households without

Region: % female N % female N

Copperbelt 50.8 1012 50.2 922

Central 46.8 814 46.8 672

Eastern 49.8 933 51.5 774

Lusaka 49.1 799 49.4 598

Northern 54.4 467 53.1 391

Luapula 50.4 738 51.5 737

North Western 48.4 901 50.9 769

Western 51.4 902 53.7 816

Southern 49.5 1006 50.4 904

Total 49.8 7572 50.7 6583

Another measure of the structure of households is the

dependency ratio. This is a measure of the portion of a

population which is composed of dependents (people who are

too young or too old to work). The dependency ratio is equal

to the number of individuals aged below 15 or over 65 divided

by the number of individuals aged 15-64. A rising dependency

ratio is of concern to countries with quickly aging populations,

since it becomes difficult for pensions systems to provide for

92

this older, non-working population. A rapidly growing

population with a high fertility rate will mean a relatively large

proportion of the population consists of children who are

dependent on the land and their families for sustenance. A

dependency ratio of 1.0 means there is one working-age

person for each dependent in the family (e.g. a family of four

with two adults and two children). Dependency ratios over 1.0

indicate a burden on the wage earners in the family and

dependency ratios under 1.0 are indicative of less burden. It

indicates the economic responsibility of those economically

active in providing for those who are not.

While the differences in the table below may seem

insignificant, they indicates that families with at least one

disabled family member have somewhat higher dependency

ratios (increased economic burden) than do families without a

disabled family member; most notably in Eastern, Lusaka and

Northern provinces.

93

Table 5.5 Mean dependency ratio by Household type and Region

Disabled family member:

Households

with

Households

without significance

Province: Mean dependency ratio t df p

Copperbelt 0.8 0.8 0.1 749 NS

Central 0.9 0.9 0.6 672 NS

Eastern 1.1 1.0 2.5 651 0.011

Lusaka 0.8 0.7 2.4 689 0.015

Northern 1.3 1.1 2.1 279 0.036

Luapula 1.0 1.2 -1.4 551 NS

North Western 1.1 1.0 0.6 558 NS

Western 1.1 1.1 0.2 596 NS

Southern 1.1 1.0 1.6 769 NS

Total 1.0 0.94 2.5 5530 0.011

In other words, with respect to some important demographic

variables there are some similarities and differences between

the two types of households. While no significant gender

difference was observed in the composition of the households,

households with disabled members were, on average, older

than their non-disabled counterparts; as well as larger and

with more dependents.

94

5.1.1Disabled and non-disabled

The screening exercise described in Section 3.1.5 was carried

out in order to predetermine households having a disabled

family member and to select suitable control households.

In addition, as a part of the Living Conditions survey, the

entire sample of 28189 individuals was asked about disability

in the form of questions identical to the screening questions

presented earlier.

Despite all training and precautions, certain households that

responded negatively to the screening questions (i.e. control

households, not having a disabled family member) in fact

answered positively to the disability questions in the Living

Conditions Survey. In this part of the analysis these individuals

are included as disabled.

A total of 3090 persons with disabilities were identified in the

sample (i.e. 11.0% of 28189 individuals). By province the

breakdown is as follows:

95

Table 5.6 Distribution of Disabled household members by province

Province:

persons with disabilities identified

sample population

%disabled

Copperbelt 377 3830 9.8

Central 356 3176 11.2

Eastern 409 3375 12.1

Lusaka 344 2837 12.1

Northern 213 1596 13.3

Luapula 310 2896 10.7

North Western 338 3371 10.0

Western 362 3277 11.0

Southern 381 3831 9.9

Total 3090 28189 11.0

Note: the data in the table above are not meant to be

indicative of prevalence. These are derived from a selected

sub-population based on a screening procedure that identified

households with and without a disabled family member. It is

anticipated that prevalence data will be presented in later

publications

96

Table 5.7 Disability by gender

Gender Disabled Non-disabled Total

N % N % N %

Female 1345 43.5 12810 51.0 14155 50.2

Male 1744 56.5 12285 49.0 14029 49.8

Total 3089 100.0 25095 100.0 28184 100

A significant gender difference was found in that 43.5% (n =

1345) of those with disabilities were females whereas the

corresponding figure for the non-disabled was 51.0% (n =

12810). ( 2 = 62.0, df = 1, p = < 0.001)

Table 5.8 Disability by gender by region

Disabled Non-disabled Region: % female N % female N significance Copperbelt 40.6 153 51.6 1781 p < 0.001

Central 34.6 123 48.3 1363 < 0.001

Eastern 46.2 189 51.2 1518 NS

Lusaka 46.8 161 49.6 1236 NS

Northern 50.2 107 54.3 751 NS

Luapula 42.6 132 51.9 1343 0.002

N.Western 46.2 156 49.9 1514 NS

Western 43.1 156 53.6 1562 < 0.001

Southern 44.2 168 50.5 1742 0.023

Total 43.5 1345 51.0 12810 < 0.001

97

The same pattern was observed is all of the provinces, see

table 5.8, above. In some provinces, however, the difference

was not statistically significant (Eastern, Lusaka, Northern and

North Western).

Mean age among the disabled household members was higher

than among the non-disabled (31.3 years and 20.6 years

respectively, t = 26.56, df = 3472, p < 0.001). This pattern

was the same in each of the provinces.

Table 5.9 Disability by age and region

Disabled Non-disabled

significance

Region: meanage

N meanage

N t df p

Copperbelt 29.6 372 22.3 3377 6.7 422 < 0.001

Central 28.4 355 20.4 2812 7.9 430 < 0.001

Eastern 31.2 392 19.6 2835 9.5 446 < 0.001

Lusaka 27.3 339 21.1 2425 6.2 412 < 0.001

Northern 33.9 204 19.2 1317 8.8 234 < 0.001

Luapula 35.3 299 20.2 2498 10.9 335 < 0.001

N.Western 30.3 331 20.9 2883 7.9 380 < 0.001

Western 38.6 356 21.4 2842 12.9 404 < 0.001

Southern 29.0 379 19.7 3433 9.0 432 < 0.001

Total 31.3 3027 20.6 24422 26.6 3472 < 0.001

Further analyses by gender revealed the same pattern. The

mean age for women was 31.4 years and 21.0 years in the

98

households with disabled members and the control group

respectively (t = 17.1, df = 1463, p < 0.001), and for men the

mean ages were 31.3 years and 20.2 years, t = 20.5, df =

2019, p < 0.001).

Table 5.10 Marital status

Disabled Non-disabled Total Marital status (age >= 15) N % N % N %

Never married 727 34.1 5289 39.6 6016 38.9 Married with certificate 249 11.7 1896 14.2 2145 13.9

Married traditional 703 33.0 4766 35.7 5469 35.3

Consensual union 24 1.1 102 0.8 126 0.8 Divorced/ Separated 124 5.8 463 3.5 587 3.8

Widowed 296 13.9 807 6.0 1103 7.1

Other 9 0.4 20 0.2 29 0.2 Total 2132 100 13343 100 154775 100

Table 5.10 reveals that there are differences between disabled

and non-disabled with respect to marital status. While fewer of

those with disabilities reported never having been married,

34.1% compared to 39.6% among those without disabilities;

among the disabled far fewer (45.8%) reported living in union

(either married with certificate or traditionally, or in a

consensual union) than those without disabilities (50.7%). In

addition 13.9% of those reporting disabilities were widowed

compared to only 5.0% of those non-disabled.

99

EDUCATION

Table 5.11 School attendance

School attendance (age >= 5)

Disabled Non-disabled Total

N % N % N %

Never attended 646 23.9 1717 8.8 2363 10.7

Still attending 569 21.0 8133 41.9 8702 39.3

Left school 1493 55.1 9572 49.3 11065 50.0

Total 2708 100 19422 100 22130 100

It is shown here that school attendance is lower among the

disabled members of the households as compared to those

household members without a disability. ( 2 = 781.1, df = 2, p

< 0.001). The proportion of those who have never attended

school is almost three times higher among the disabled

members as compared with the non-disabled (23.9% versus

8.8% respectively).

This finding was again confirmed among females and males

separately (28% of disabled females and 21% of disabled

males never attended school compared with 11% of non-

disabled females and 7% of non-disabled males).

A separate analysis was carried out to explore whether

particular types of disabilities were represented among those

100

who had not attended school (Table 5.12). The first part of the

table presented below is derived from the ‘Living Conditions

survey’ and the second part is derived from the ‘Detailed

Disability survey’ that will be presented in more detail later.

Among those 5 years of age or older, an important difference

is observed in school attendance (or lack thereof) according to

the different categories of disability type. Looking at those who

never attended school, 23.6% (or 251 of 1063) of those with

seeing, hearing or communication (sensory) disabilities said

that they had never attended school and 21.4% (or 204 of

955) of individuals who reported a physical disability, while

35.7% (90 of 252) of those with psychological disabilities

stated the same. (Several reported multiple disabilities, and

only the first disability reported is assessed here. For more

information on type of disability see Table 5.24)

Among those disabled before 18 years of age the same over-

representation among those with psychological disabilities is

seen. 24.1% of those with sensory disabilities, 22.0% of those

with physical disabilities and 43.3% of those with psychological

disabilities reported never having attended school. Results in

both tables are statistically significant (p < 0.001).

Those with disabilities associated with age or other causes are

few and not commented upon in this particular analysis.

101

Table 5.12 School attendance by Type of disability

sensory physical psychological

Age >=5 years n % n % n %

never attended 251 23.6 204 21.4 90 35.7

still attending 246 23.1 193 20.2 42 16.7

left school 566 53.2 558 58.4 120 47.6

Total 1063 100 955 100 252 100

Age >= 5 years & disabled prior to 18 years

n % n % n %

never attended 142 24.1 123 22.0 74 43.3

still attending 224 38.0 168 30.0 37 21.6

left school 224 38.0 269 48.0 60 35.1

Total 590 100 560 100 171 100

102

Table 5.13 School grade completed

Grade completed (age >= 5)

Disabled Non-disabled Total

N % N % N %

Grade 9 or less 1589 80.0 13746 79.6 15335 79.6

Grade 10 – A level 279 14.0 2612 15.1 2891 15.0

Higher education 119 6.0 913 5.3 1032 5.4

Total 1987 100 17271 100 19258 100

Table 5.13 shows some interesting results among those who

had in fact attended school. It appears that slightly more of

those with a disability achieved a higher level of education.

Though the differences observed are not statistically significant

( 2 = 3.1, df = 2, p = NS), they seem to indicate that, given

the opportunity to attend school, those with disabilities are

able to match the achievements of those without disabilities.

This same pattern was repeated by geographical region and

gender, though, as would be expected, since fewer women

attended school in the first place (see comment above) the

proportion of women achieving each level of education was

lower than that observed among men.

A further indication of potential skewed distribution of

(educational) resources between disabled and non-disabled

103

were found in that a higher proportion of people with

disabilities over 5 years of age has no written language

abilities (49.9% versus 42.2% among the non-disabled

population) ( 2 = 57.0 df = 1, p < 0.001). The results are

similar whether the cut-off is taken at 10 years or 15 years of

age or older.

As above, the same pattern was confirmed in a gender

analysis: among those with disabilities, 46.1% of males and

55.1% of females over the age of 5 years have no writing

skills, compared to 38.3% of males and 46.0% of females

without disabilities. Regardless of disability status these figures

are high but the contrasts between both disabled/non-disabled

and males/females cannot be taken lightly.

Table 5.14 Languages written

Languages written (age >= 5)

Disabled Non-disabled Total

N % N % N %

None 1345 49.9 8376 42.2 9721 43.1

One or more 1350 50.1 11458 57.8 12808 56.9

Total 2695 100 19834 100 22529 100

104

EMPLOYMENT AND SKILLS

Table 5.15 Work status: Unemployment

Work status (age 15 – 65)

Disabled Non-disabled Total

N % N % N %

Currently working or returning to work

785 45.5 7060 58.0 7845 56.5

Not currently working 939 54.5 5105 42.0 6044 43.5

Total 1724 100 12165 100 13889 100

Table 5.15 illustrates the degree of employment/

unemployment among persons between the economically

active ages of 15 – 65 years. The data presented here are not

meant to provide a statement on the unemployment rate in

the country; however, they appear to indicate that the

unemployment is currently very high in Zambia. The difference

between those with and without disabilities appears to be

large, and a significantly higher proportion of people with

disabilities (54.5%) is currently not working than among

people without disabilities (42.0%) ( 2 = 95.5, df = 1, p <

0.001).

It is of importance to note that the high unemployment figures

reported here may be explained by differences in the questions

that are used to elicit data on employment. The results

produced here refer to formal employment (with an employer)

or contractual employment including seasonal labour and not

self-employment or work at home.

105

Table 5.16 Unemployment by province

Province: Disabled Non-disabled p-value

Copperbelt 50.2 42.3 0.035

Central 41.2 28.5 < 0.001

Eastern 42.9 26.1 < 0.001

Lusaka 60.4 47.3 < 0.001

Northern 57.3 62.5 NS

Luapula 60.7 41.8 < 0.001

North Western 58.2 46.4 0.003

Western 75.5 62.6 0.001

Southern 49.3 34.0 < 0.001

Similar patterns of unemployment were observed across all

provinces. Apart from Northern province, where

unemployment was slightly (though non-significantly) higher

among those without disabilities, people with disabilities

showed higher rates of unemployment than those without

disabilities. Highest unemployment was observed in Northern

and Western provinces while Central and Eastern provinces

provided the lowest rates observed in the survey.

Examining men and women separately, statistically significant

differences were observed in unemployment among males

(disabled 54% and non-disabled 45%) ( 2 = 25.1, df = 1, p <

0.001), and women (disabled 55% and non-disabled 39%) ( 2

106

= 70.6, df = 1, p < 0.001). Interestingly, unemployment

among those without disabilities was lower among women

than men (39% versus 45%) while the unemployment rates

were very similar among those with disabilities (women 55%,

men 54%).

SKILLS

It was however shown that among the same group of

potentially economically active persons 15 – 65 years of age,

59.0% (n = 741) of those with disabilities had acquired some

skill, compared to 58.7% (n = 4907) of the non-disabled ( 2 =

0.05, df = 1, NS). This is most likely a reflection of what is

offered to children/persons with disability, i.e. skills training is

(more) common in the special education services for persons

with disabilities. Somewhat divergent patterns were seen in

the provinces, with higher rates for those with skills among the

disabled in Copperbelt, Central, Lusaka, Northern, and North

Western provinces, though none of the observed differences

were large enough to reach statistical significance. By gender

no significant differences were observed with respect to

disability and possession of skills, though again significantly

more males (64%) than females (54%) had acquired some

form of skill.

107

Table 5.17 Skills

Skills (age 15 – 65)

Disabled Non-disabled Total

N % N % N %

Yes 741 59.0 4907 58.7 5648 58.7

No 514 41.0 3456 41.3 3970 41.3

Total 1255 100 8363 100 9618 100

As may be expected, more persons with skills (formally or

informally trained) are employed as compared to persons

without skills (77% versus 41%). Among persons with

disabilities, 65% (n = 474) of individuals with skills are

employed, as compared to 25% (n = 127) of individuals

without skills ( 2 = 190.5, df = 1, p < 0.001). In the non-

disabled group the figures were, 79% (n = 3772) of individuals

with skills being employed, as compared to 43% (n = 1447) of

individuals without skills ( 2 = 1130.7, df = 1, p < 0.001).

Among the 7845 individuals who said they were currently

working or returning to work, 4389 (56%) gave their mean

monthly salary. There was no statistically significant difference

observed in mean monthly salary between those with and

without disabilities (disabled: 614,627 ZMK, non-disabled:

724,777 ZMK), (t = 0.93, df = 4387, p = NS). Similar trends

and results were observed in the provinces. North Western

province showed higher mean monthly income among those

108

with disabilities, though these results were also not statistically

significant.

Table 5.18 Monthly salary (in 1000)

Disabled Non-disabled

Mean monthly salary ZMK ZMK p-value

Copperbelt 762 837 NS

Central 541 812 NS

Eastern 516 525 NS

Lusaka 1003 1405 NS

Northern 328 401 NS

Luapula 425 453 NS

North Western 595 584 NS

Western 325 380 NS

Southern 542 596 NS

Total 615 725 NS

As may have been expected, women’s monthly salaries were

lower than men’s among those with and without disabilities.

Among those without disabilities, women’s mean salaries were

514,619 ZMK versus 858,522 ZMK for men (p < 0.001).

Among those with disabilities women’s mean salaries were

517,245 ZMK compared to 659,445 ZMK for men (p = NS).

109

5.1.2Comparing households

In the preceding section, the grounds for comparison were

individuals with and without disabilities in all households. In

this section we will look at differences between households

with and without a disabled family member as determined

through the screening process. (Households having a disabled

family member identified after the screening process are not

included here.) First we present a regional distribution of

households included in the survey.

Table 5.19 Regional distribution of households

Region Disabled HH Non-disabled HH

Total

N % N % N %

Copperbelt 380 13.2 390 13.6 770 13.4

Central 344 11.9 349 12.2 693 12.1

Eastern 356 12.4 340 11.9 696 12.1

Lusaka 366 12.7 325 11.4 691 12.0

Northern 142 4.9 147 5.1 289 5.0

Luapula 276 9.6 293 10.2 569 9.9

North Western 305 10.6 296 10.4 601 10.5

Western 320 11.1 322 11.3 642 11.2

Southern 392 13.6 397 13.9 789 13.7

Total 2881 100 2859 100 5740 100

110

EMPLOYMENT

Table 5.20 Employment

Disabled HH Non-disabled HH

Total Is someone in the household working? N % N % N % No 473 16.4 467 16.3 940 16.3

Yes 2413 83.6 2398 83.7 4811 83.7

Total 2886 100 2865 100 5751 100

No significant difference was observed between households

with or without a disabled family member in terms of having at

least one family member working; about 16% of households,

regardless of disability status have no one employed.

Regionally the overall pattern was about the same; however

the rate of having no household member in employment

ranged from about 4.5% in Central province to 36% in

Western and Northern provinces. Only in Northern and

Western provinces were the differences between households

with and without a disabled family member statistically

significant. In Western province significantly more households

with a disabled family member had no one employed (39%)

compared to 32% among households without a disabled family

member, while in Northern province the trend was reversed

with significantly more control households having no employed

111

family members (43%) compared to households with a

disabled family member (31%).

(Caution: These figures should not be interpreted as

employment rates.)

Household income and expenses were measured in ZMK

(Zambian Kwacha, 1 USD = 3,567.5 ZMK, 01.06.06).

Table 5.21 Household income and expenses (in 1000 ZMK)

Household income - good month

Disabled HH Non-disabled HH Total

n % n % n %

none 151 7.4 110 5.2 261 6.3

<249 647 31.6 686 32.3 1333 32.0

250-499 394 19.2 403 19.0 797 19.1

500-2 499 732 35.7 806 37.9 1538 36.9

>=2 500 124 6.1 119 5.6 243 5.8

Total 2048 100 2124 100 4172 100

2 = 10.0, df = 4, p = 0.04

112

Table 5.21 …/continued

Household income - bad month

Disabled HH Non-disabled HH Total

n % n % n %

none 349 18.9 284 14.9 633 16.9

<249 768 41.5 818 43.1 1586 42.3

250-499 314 17.0 333 17.5 647 17.3

500-2 499 357 19.3 397 20.9 754 20.1

>=2 500 62 3.4 68 3.6 130 3.5

Total 1850 100 1900 100 3750 100

2 = 10.5, df = 4, p = 0.03

Household expenses

Disabled HH Non-disabled HH Total

n % n % n %

none 97 5.0 74 3.7 171 4.3

<249 944 48.5 1023 50.6 1967 49.5

250-499 387 19.9 398 19.7 785 19.8

500-2 499 475 24.4 486 24.0 961 24.2

>=2 500 45 2.3 42 2.1 87 2.2

Total 1948 100 2023 100 3971 100

2 = 5.4, df = 4, p = NS

In the questionnaire, income and expenses were recorded both

as exact amounts and in the form of categories (above) for

113

those who did not want to disclose the exact amounts. For the

purposes of analysis, exact Kwacha amounts were re-coded

into categories in order to expand the response percent.

Results are presented in this form. Being aware that in many

households income may fluctuate seasonally (for example

dependent on the sale of farm produce), we asked, in addition,

for information to reflect income and expenses during a good

month and a bad month. Results are presented for both.

As is expected the number of households in the lower income

categories is higher in bad months. A total of 1594 households

(38.3%) have monthly incomes under 249 000 ZMK in a good

month and this increases to 2219 households (59.2%) in a bad

month. Many households are dependent upon incomes that are

unstable. Furthermore, it appears from the results presented

in Table 5.21 that households with disabled members have in

general lower income, less expenses regardless of seasonal

fluctuations than households without disabled members.

(There are higher percentages in the lower income/expense

categories for households with disabled household members

than households without.) In all cases these differences are

statistically significant (see Table 5.21).

A list of 39 different household possessions was prepared and

participants could indicate the items possessed in their

household. The list covers a wide range of possessions that

may be included in either a rural or urban household. The

number and type of possessions in a household will be

dependent on its location (rural or urban) as well as its

114

economic status. In this instance we chose to only assess the

number of possessions according to the ‘disability status’ of

the household. The maximum number of possessions recorded

was 35 and the mean number of possessions for the entire

sample was 9.8 items.

No significant difference was observed between households

with and those without a disabled family member, each having

an average of about 9.8 possessions. Lusaka was the only

province to demonstrate a significant difference between

household type, with respect to mean number of possessions;

households with a disabled family member had, on average,

slightly fewer possessions (8.5) as compared to households

without disabled members (9.9). This apparently slight

difference is statistically significant (t = 3.4, df = 676, p =

0.001). More importantly, these relatively low numbers are a

reflection of the level of living standards in Zambia in general.

Fewer disabled households stated that salaried work was the

primary source of income – 25% versus 30% - and this

reflects the fact that fewer households with disabled family

members had someone working (see above). Other main

sources of income did not reveal any appreciable difference

between the two types of households: for example,

subsistence farming: about 30% in each type of household and

informal business about 19%.

115

A family’s housing situation was, in part, classified according

to type of floor (mud, concrete/cement, wood, other), roof

(wood, corrugated iron sheets, grass/leaves thatch,

tiles/shingles, paper thatched, other), windows (none,

paper/wood, glass, cloth/sacks, reeds, sun-dried bricks,

other), and walls (poles and mud, corrugated iron,

grass/leaves, bricks, compacted earth, concrete, other). None

of these housing characteristics showed any particular

difference with respect to type of household (disabled/non

disabled). This is perhaps in part a consequence of the design

of the survey, in that we attempted to match households with

and without a disabled family member in each of the region

surveyed.

It was observed however that the size of the house (as

measured in number of bedrooms) was slightly larger in

households without a disabled family member (1.8 versus 1.7;

t = 3.1, df = 5613, p = 0.002). Moreover households without

a disabled family member more often have mosquito nets for

some or all beds in the household and these are more often

than not treated with chemicals. These results are perhaps

reflective of the slightly higher economic status of these

households.

116

Table 5.22 Housing ownership

Ownership Disabled HH Non-disabled

HH

Total

N % N % N %

Rented 466 16.5 533 18.9 999 17.7

Owned 2096 74.1 1949 69.2 4045 71.7

Rent free, not owned

50 1.8 56 2.0 106 1.9

Provided by employer (gov’t)

146 5.2 194 6.9 340 6.0

Provided by employer (private)

65 2.3 81 2.9 146 2.6

Other 4 0.1 4 0.1 8 0.1

Total 2827 100 2817 100 5644 100

Table 5.22 illustrates a slight difference in housing ownership

between the two groups; most notably, more households with

a disabled family member were home-owners than were

households without a disabled family member. The differences

in the above table were statistically significant, but by and

large the similarities between the two samples is most striking

and again illustrates the comparability of the two samples and

reflect the chosen methodology of selecting a control

household as one neighbouring a household having a disabled

family member.

117

Five questions asked specifically about different aspects of

housing infrastructure. These were: main source of water,

energy source for cooking, energy source for lighting, type of

toilet used by the household, and method of refuse/rubbish

removal. Each of these five questions had different response

categories that were coded in an order of descending quality:

Main source of water: 1. piped water inside, 2. piped water outside (on property), 3. piped water outside property, 4. public pipe/tap, 5. borehole, 6. protected well, 7. unprotected well, 8. natural source

Energy sources for cooking or lighting: 1. electricity 2. paraffin/gas/solar 3. wood/charcoal/coal 4. dung/grass etc. 5. none

Type of toilet facility: 1. flush toilet (owned or shared) 2. communal toilet 3. san plat (vip) 4. pit latrine 5. bucket/pan 6. bush/other

Refuse/rubbish removal: 1. communal dump (municipality collects) 2. communal dump (household responsibility) 3. own rubbish pit/burn/use on land 4. own rubbish pit (cover up) 5. own rubbish pit (uncovered) 6. dropped at specified place 7. no provision for waste removal

118

These individual characteristics of housing standard were

ranked according to degree of hygiene or level of technical

implementation (in decreasing order from best to worst) i.e.

higher score reflects a lower standard. A composite score was

devised by adding the above 5 elements into a scale to define

housing standard with a possible range from 5 (best standard)

to 31 (worst standard). For the 5355 (93.2%) of households

that had data recorded for all 5 variables the range was from 5

to 29, mean 17.2 (SD 5.1).

Standards, as defined above, varied across the provinces:

from best (13.7) in Copperbelt and (14.2) in Lusaka, to worst

(19.2) in Northern, (19.6) in Luapula, (20.1) in Western and

(20.5) in North Western province.

The mean difference between households with a disabled and

those without was 17.3 and 17.2 respectively (p = NS),

indicating that, with respect to the five indices included, and

despite the differences in housing situation described above,

households with disabled family members, on average, did not

have a lower standard than did households without a disabled

family member. These findings were replicated in each of the

nine provinces.

Another indication of household standard may be derived from

availability and access to different forms of communication and

information. The questionnaire requested data on the

availability of telephone, radio, television, Internet, banking

119

facilities, newspaper, post office and library. Each of these was

coded as:

1. own/use regularly

2. have access to

3. Have no use for

4. have no access to

As above, a composite score was devised by adding the above

8 elements into a scale to define standard with respect to

information access. This scale had a possible range from 8 (full

access/availability) to 32 (no access/availability), again higher

score reflects a lower level of accessibility. For the 5092

(88.6%) of households that had data recorded for all 8

variables, the range was 8 to 32, mean 24.7 (SD 6.4).

Access to information, as defined above, was significantly

greater in Central (22.2), Eastern (22.6), Copperbelt (22.8),

Southern (23.6) and Lusaka (23.9) provinces; and poorer in

Luapula (26.8), North Western (27.7), Western (28.6) and

Northern (28.7) provinces.

The mean difference between households with a disabled and

those without was 24.8 and 24.6 respectively (p = NS)

indicating that, with respect to the eight information elements

included, households with disabled family members, on

average, had similar access to information as did households

without a disabled family member.

120

Only in Southern province was the difference between

households significant; with households having a disabled

family member achieving poorer results (24.3) as compared to

households without a disabled family member (22.9) (t =

3.09. df = 758, p = 0.002).

5.2 Disability study

Of the 2898 individuals identified as having a disability during

the first phase of the survey (Living conditions survey), a total

of 2865 (98.9%) responded to the detailed disability survey.

In about 40% of the cases the person with the disability

responded themselves, whereas proxy reporters answered in

the remaining 60%.

Table 5.23 Age profile of person with disability

Age group Male Female Total in years n % n % n % 0-5 114 7.3 96 8.3 210 7.7 6-10 206 13.1 139 12.0 345 12.6 11-20 336 21.4 250 21.5 586 21.4 21-30 251 16.0 191 16.4 442 16.2 31-40 220 14.0 134 11.5 354 13.0 41-50 163 10.4 127 10.9 290 10.6 51-60 113 7.2 112 9.6 225 8.2 61+ 167 10.6 113 9.7 280 10.2 Total 1570 100 1162 100 2732 100 The age range for the group of disabled was from 0 to 95 ears.

Mean age was 30 years (males: 30.1 years, females: 30.2

years). Gender distribution in this sub-sample was 57% men

121

and 43% women. No significant age/gender associations were

observed.

Among the provinces, only Central and Lusaka provinces

showed any significant gender differences; in Central province

males were over-represented (13.5%) compared to females

(9.4%), and in Lusaka females were over-represented

(12.3%) compared to males (10.0%). And with respect to

mean age, respondents from Western (38.1 years), Luapula

(34.4 years) and Northern (36.0 years) provinces were

significantly older than respondents from the other provinces

(mean age less than 30 years).

Table 5.24 Distribution of the type of main disability by gender

Type of Male Female Total

disability n % n % n %

Seeing 335 22.6 295 26.4 630 24.2

Hearing 287 19.4 219 19.6 506 19.5

Communication* 51 3.4 38 3.4 89 3.4

Physical 625 42.2 457 40.8 1082 41.6

Intellectual/ emotional

183 12.4 110 9.8 293 11.3

Total 1481 100 1119 100 2600 100

*includes: dumb, stammering and tongue-tied

Respondents were asked to describe their disability in their

own words, and the major disability described was coded.

Overall, about 42% of coded disabilities were classified as

122

physical. These include minor and major physical disabilities

(including paralysis) and 47% reported some sensory

impairment (seeing, hearing and communication). Intellectual

disabilities, learning disorders, and emotional disabilities

accounted for about 11% of reported disabilities. No significant

gender difference was observed.

When asked about the type and cause of the disability, the

respondent’s own opinion was recorded. No attempt was made

to acquire a medical verification of either type or cause of

disability. Main recorded causes of disability include physical

illness, congenital/from birth and accidents. Of interest is the

fact that 6.5% who reported that witchcraft was the cause of

their disability.

Almost 30% of disabilities registered were reported as

originating at birth. In addition, 43.1% of those who

responded claimed that they became disabled as children or

young adults (age less than or equal to 20 years). 21.4%

claimed that they had acquired their disability between birth

and the age of 6. (Caution: numbers in the preceding two

tables differ slightly with respect to congenital disabilities -

“from birth” - due to differences in coding of questions and

subjective interpretations.)

An attempt was made to record a respondent’s awareness of

the different services that are currently available in the

country and at the same time determine whether they are in

need of these same services and if they had received them.

123

Table 5.25 Which of the services, if any, are you aware of and have ever needed/received?

Type of service aware of service

need service received service

n %* n %* n %**

Health services 2287 79.8 2198 76.7 1738 79.3

Traditional healer

2106 73.5 926 32.3 582 62.9

Medical rehabilitation

1762 61.5 1812 63.2 679 37.5

Counselling for parent/family

1179 41.2 1354 47.3 295 21.9

Assistive device services

1717 59.9 1642 57.3 301 18.4

Educational services

1557 54.3 1347 47.0 239 17.8

Counselling for disabled

1277 44.6 1468 51.2 209 14.3

Welfare services

1500 52.4 1794 62.6 151 8.4

Vocational training

1292 45.1 1006 35.1 84 8.4

* percentage of total number disabled (n = 2865)

** percentage of those claiming they needed theservice

With the exception of counselling (both for parents/family and

for the disabled themselves) and vocational training services

well over half (50%) of the sample were aware of the

existence of the services. The expressed need for services was

in many cases of almost the same magnitude as their

awareness; however, fewer expressed a need for:

124

traditional healers (awareness:need = 74%:32%)

educational services (awareness:need = 54%:47%)

vocational training (awareness:need = 45%:35%)

The relatively low expressed need for traditional healer may

indicate that in this particular setting, modern medical and

health services are more in demand. The latter two

discrepancies are likely due to the fact that educational and

vocational services are age related.

Interestingly, for certain services the expressed need was

greater than the awareness of the service: welfare services

(awareness:need = 52%:63%), counselling services for the

person with a disability (awareness:need = 45%:51%) and

counselling services for parents/family (awareness:need =

41%:47%). That is, even though someone was not aware that

the service was available they had expressed a need for it.

More strikingly however, was the gap observed between the

expressed need for services and the actual acquisition of that

service. For each of the services listed in the table, fewer

actually received it than had expressed a need for it. Among

the most noticeable shortcomings were, for example, welfare

services and vocational training – only 8.4% of those who

expressed a need for these services had actually received

them. Other services including assistive device services,

counselling services for both individuals with disabilities and

their families, and educational services were received by less

125

than 25% of those who needed them. On a brighter note,

almost 80% of those who expressed a need for health services

had in fact received them – something that indicates that if

priorities are made they can be met.

Table 5.26 Gap analysis (services not received) by type of disability

Type of disability

Total Gap

Sensory Physical Mental/

emotional

Health services 21.7 23.4 17.1 21.2

Traditional healer 38.1 43.2 39.0 13.6

Medical rehabilitation 62.5 71.5 49.7 69.8

Counselling for family 78.1 81.1 73.1 80.8

Assistive device services 81.6 84.6 74.7 94.9

Educational services 82.2 82.8 80.0 87.6

Counselling for disabled 85.7 89.3 81.6 85.2

Welfare services 91.6 93.5 91.1 91.1

Vocational training 91.6 91.5 91.3 93.5

In the table above we present an analysis of the gap between

services needed and received (here presented as services not

received) according to self-reported type of disability. In

general variation by type of disability is small – but it is worth

noting that the recorded gap in medical rehabilitation services

for those with physical disabilities, while still high at about

50%, was smaller than for those with other types of

126

disabilities. This may indicate that scant services are

prioritized for those with physical disabilities. Also the gap

experienced by those with mental/emotional disabilities for

traditional healers was lower indicating that this particular

group more often receives the services of the traditional healer

they claim to need.

Most of the persons with disabilities surveyed expressed a

need for some service. However 287 individuals (10%)

expressed no need for any of the services listed (or other

services not listed). Only 8.2% or 232 individuals expressed a

need for a single service, the majority requiring multiple

services and 56% listing 5 services or more.

Respondents were asked to assess the services they had

received in the past. Their experiences are listed in the table

below.

127

Table 5.27 Assessment of services received

Experience with service:

Service: N Too costly

Too far

Not helping

Level reached

Not available

Not Satisfied

Health services

807 8.1 10.2 49.8 14.3 1.5 9.5

Traditional healer

423 5.7 2.1 47.5 5.4 0.7 28.6

Medical rehabilitation

485 16.3 11.5 40.4 19.0 2.5 4.7

Counselling for family

183 1.1 1.6 49.7 12.6 9.3 7.7

Assistive device services

116 19.0 4.3 14.7 17.2 9.5 4.3

Educational services

108 16.7 11.1 13.0 14.8 7.4 2.8

Counselling for disabled 138 2.9 4.3 37.7 18.8 13.8 5.8

Welfare services

87 5.7 11.5 17.2 4.6 24.1 5.7

Vocational training

74 13.5 1.4 6.8 32.4 4.1 5.4

Of those who responded to these individual questions, in many

instances almost 50% found that the service they were using

was no longer helpful. With the exception of traditional

healers, dissatisfaction was not a cause for termination of the

service. Other important reasons for termination of service

were cost, (in particular for rehabilitation, assistive device and

educational services), availability (for welfare services) and

accessibility (in terms of distance to service).

128

EDUCATION

Of those sampled 60.2% (n = 1726) were disabled before 18

years of age. These were asked about their educat ion and

schooling experiences. Table 5.28 on the following page shows

the different types of schools attended by those eligible for

school according to age. At each level of educat ion, for those

who attended school, the majority went to mainstream or

regular school. Of part icular note is the relatively high

proportion (32.9%) of those who did not attend primary school,

though eligible (according to age). As might be expected,

school attendance declines with age and this is confirmed in

that 66.0% of disabled children 15 years and over, (i.e. eligible

for high school) did not attend, and over 90% of those over 17

did not attend tert iary or vocational school.

Very few actually reported being refused entry to a regular or

special school because of their disability. It is, none the less,

worth not ing that 35 individuals were refused entry to regular

pre-school, 187 were refused regular primary school and 70

were refused regular high school. In addit ion, 9 individuals

were refused entry into a special class or school because of

their disability.

Of those who were disabled prior to 18 and were, at the time of

the interview, 15 years or older, 70 (10.5% of those who

responded) said that they had studied as far as they had

planned and 153 (23%) were still studying. Almost two-thirds

(66.4%) said that they had not studied as far as they had

planned.

130

Table 5.28 Type of school attended

What type of school do/did you mainly attend?

Mainstream/ regular school

Special school

Special class in regular

school Did not go toschool (NA) TOTAL

n %* n %* n %* n % N

Pre-school/early childhood (all ages) 214 83.6 34 13.3 8 3.1 1368 84.2 1624

Primary school (age >= 5 years) 1031 90.1 88 7.7 25 2.2 562 32.9 1706

High school (age >= 15 years) 317 89.3 27 7.6 11 3.1 689 66.0 1044

Tertiary (age >= 18 years) 67 89.3 3 4.0 5 6.7 790 91.3 865

Vocational training (age >= 18 years) 40 66.7 12 20.0 8 13.3 802 93.0 862*%: percentage of those who DID GO TO SCHOOL

131

EMPLOYMENT

Asked whether they were currently working or returning to

work, those 15 years and older (n=1960) replied:

473 (25.3%) currently working,

285 (15.2%) not currently working, but have been

previously employed,

1072 (57.2%) never been employed

43 (2.3%) housewife

87 no response

Among those who had never been employed, 129 reported

that they were still attending school – leaving at total of 943

individuals aged 15 years or older who had never been

employed. Among the 285 who were not currently working but

had been previously employed, 27% had terminated

employment because of their disability.

ACCESSIBILITY

Accessibility at home is shown in Table 5.29. Generally

accessibility in the home does not seem to be a problem. It

can be claimed from the data presented here that the majority

of those who have the room or facility mentioned also have

access to that room or facility. Few households have separate

dining rooms (overall over 57% do not have them) and almost

23% claim not to have separate living rooms. Overall 9.4% of

132

households do not have separate toilet facilities (see column

“have none”).

Table 5.29 Accessibility at home

Accessible Not accessible

Have none Total

Room/ facility n % n % n % N

Kitchen 2491 88.1 167 5.9 171 6.0 2829

Bedroom 2649 93.6 137 4.8 45 1.6 2831

Living room 2056 72.7 125 4.4 649 22.9 2830

Dining room 1126 39.8 82 2.9 1619 57.2 2828

Toilet 2364 83.6 197 7.0 266 9.4 2837

133

Table 5.30 Accessibility from home

Never go Accessible

Not

accessible

None

available N n %

# who

use facility n % n % n %

Place of worship 2809 384 13.7 2425 2194 90.5 221 9.1 9 0.4

Health care clinic 2805 354 12.6 2451 2076 84.7 287 11.7 88 3.6

Hospital 2798 552 19.7 2246 1350 60.1 407 18.1 489 21.8

Public transport 2794 496 17.8 2298 1501 65.3 465 20.2 332 14.4

Shops 2807 642 22.9 2165 1816 83.9 282 13.0 67 3.1

Sports facilities 2810 1296 46.1 1514 1130 74.6 167 11.0 217 14.3

Post office 2812 1310 46.6 1502 766 51.0 232 15.4 504 33.6

Magistrates office 2806 1438 51.2 1368 833 60.9 203 14.8 332 24.3

Recreational facilities 2811 1591 56.6 1220 737 60.4 139 11.4 343 28.1

Workplace 2800 1864 66.5 936 638 68.2 85 9.1 213 22.8

Police station 2808 1348 48.0 1460 805 55.1 242 16.6 413 28.3

School 2802 1896 67.7 906 691 76.3 129 14.2 86 9.5

Bank 2803 1457 52.0 1346 502 37.3 223 16.6 621 46.1

Hotels 2739 1456 53.2 1283 282 22.0 90 7.0 911 71.0

134

As can be seen in the table above, accessibility does not seem

to be a major problem for people with disabilities in the

survey. Places of worship, primary health care clinics, shops

and schools are accessible to over 75% of those who

responded and who had use for the facility. On the other side,

however, it is worth noting that public transport and hospitals

are NOT accessible to about a fifth of the population (18.1%

and 20.2% respectively).

TECHNICAL AIDES AND ASSISTIVE DEVICES

Respondents were also asked if they used assistive devices –

372 of 2865 (13.0%) responded “yes”. More than one type of

device could be registered. Interestingly, signif icantly more

men (16%) than women (12%) claimed to use an assistive

device ( 2 = 6.9, df = 1, p = 0.008). There appeared also to

be some regional differences in use of assistive technology (of

all types): about 18% of those identified as having a disability

used assistive devices in Copperbelt and Central provinces and

less than 10% reported the same in North Western (7.8%),

Eastern (8.3%), Lusaka (8.3%) and Northern (4.6%)

provinces. ( 2 = 35.1, df = 8, p < 0.001). The remaining

provinces fell between these extremes.

135

Table 5.31 Type of assistive devices in use

Type of device Examples # users

#respondents

%

Personal mobility

Wheelchairs, crutches, walking sticks, white cane, guide dog, standing frame

206 266 77.4

Information Eye glasses, hearing aids, magnifying glass, enlarge print, Braille

92 221 41.6

Personal care & protection

Special fasteners, bath & shower seats, toilet seat raiser, commode chairs, safety rails, eating aids

1 172 0.6

Communication Sign language interpreter, fax, TTY, portable writer, PC

22 178 12.4

For handling products and goods

Gripping tongs, aids for opening containers, tools for gardening

1 200 0.6

Household items

Flashing light on doorbell, amplified telephone, vibrating alarm clock

2 171 1.2

Computer assistive technology

Keyboard for the blind 1 171 0.6

Asked whether their device was in good working condition

76% answered “yes”.

136

14% of those using assistive devices had acquired their device

from government health services, 9% through NGOs, 44%

privately and the rest through other sources. When asked who

maintains or repairs the device, 46% replied that they took

responsibility for the device themselves, 3.6% stated that the

government undertook maintenance and reparations, while

20.8% relied on their families for support in these matters and

21.1% claimed that their device either were not maintained or

that they couldn’t afford maintenance/repairs.

73% of those using personal mobility devices had received at

least some guidance or instructions for use but almost a

quarter (23%) was given no information or help in how to use

or maintain their assistive device.

137

Table 5.32 Assistance needed in daily life activities

Yes Sometimes combined % responding

yes/sometimes

Do you need

help with:

N n % n % % male female p-value

emotional support 2642 1954 74.0 354 13.4 87.4 87.4 87.2 NS

finances 2532 1184 46.8 520 20.5 67.3 64.1 72.0 < 0.001

shopping 2537 1135 44.7 477 18.8 63.5 65.5 60.8 0.018

cooking 2575 1421 55.2 293 11.4 66.6 73.0 58.8 < 0.001

transport 2470 1054 42.7 510 20.6 63.3 60.9 66.6 0.004

studying 1057 359 34.0 127 12.0 46.0 43.1 48.5 NS

moving around 2736 509 18.6 447 16.3 34.9 34.7 35.4 NS

bathing 2782 379 13.6 305 11.0 24.6 25.3 23.5 NS

dressing 2774 300 10.8 267 9.6 20.4 20.3 20.3 NS

toileting 2779 210 7.6 174 6.3 13.8 13.7 14.1 NS

feeding 2767 164 5.9 105 3.8 9.7 9.9 9.4 NS

RO

LE W

ITH

IN T

HE H

OU

SEH

OLD

AN

D F

AM

ILY

138

ROLE WITHIN THE HOUSEHOLD AND FAMILY

The results presented in the table above are obviously

dependent on numerous factors; among them the sex and age

of the person with disabilities and the severity of the disability.

These figures are based on the portion of the sample that did

not classify the activity as ‘not applicable’; the basis, or

denominator, for the calculations is found in the column to the

left. Help with studying was perhaps the most age dependent

– and approximately 60% of the sample said that this was not

applicable. As in the other activities, this question was

therefore based on those who responded yes, yes sometimes

or no (n = 1057).

We chose to examine the difference in needs based on gender

and determine whether these dependencies impacted on

perceived needs for assistance.

In typically male dominated societies one may expect men to

need more help with what may be considered as female chores

such as shopping or cooking while women would need more

help with finances or require more emotional support. In the

data presented here, statistically significant differences were

observed for assistance required with finances; 72% of women

needing assistance compared to 64% of men ( 2 = 16.9, df =

1, p < 0.001), shopping; 61% of women and 66% of men ( 2

= 5.6, df = 1, p = 0.018), cooking; 59% of women and 73%

of men ( 2 = 57.8, df = 1, p < 0.001), and transport; 67% of

women and 61% of men ( 2 = 8.1, df = 1, p = 0.004). The

139

other small differences observed in the data were non-

significant.

Table 5.33 Involvement in family life

Involvement in family life

N

%yes

% sometimes

%no

Do you go with the family to events?

2640 63.1 14.5 22.4

Do you feel involved and part of the family?

2613 86.3 5.4 9.3

Does the family involve you in conversations?

2634 79.1 9.7 11.2

Does the family help you with daily activities?

2699 81.4 11.3 7.2

Do you appreciate it that you get this help?

2488 91.9 2.8 5.3

Did you take part in your own traditional ceremonies?

2159 49.0 5.5 45.5

…for those over 15 years

Are you consulted about making household decisions?

1876 74.6 12.8 12.5

Do you make important decisions about your life?

1887 61.2 7.5 31.3

Are you married or involved in a relationship?

1893 47.7 52.3

Does your spouse/partner have a disability?

957 9.1 90.9

Do you have children? 1847 63.9 36.1

While the majority of those questioned were involved at least

sometimes in different aspects of family life, it is worth noting

140

that as many as 22% are not included in family events, 11%

are not involved in conversations and 9% do not feel a part of

the family. Furthermore, of those 15 years and older, 12.5%

are not consulted about making household decisions and

31.3% are not part of the decision-making process concerning

their own lives. Certain of these findings may be related to the

type or severity of the disability in question, but it is,

nonetheless, worth noting the results.

DEFINING SEVERITY:

Measures of Activity limitations and Participation restrictions

A good deal of information has been collected during the

survey that could be used to define the severity of a person’s

situation with respect to their disability. We have seen so far

an assessment of an individual’s needs for services, and an

assessment of daily activities that a person may need help in

accomplishing (see Table 5.25 – need for services, and Table

5.32 – need for assistance). Based on the items listed in these

tables, simple scores can be constructed by adding up the

number of services one needs or the number of daily tasks one

needs help in accomplishing, to indicate the severity of a

person’s situation. The more services needed : the worse off

that person is; or the more help needed in doing daily tasks :

the worse off that person is.

In addition, we present a matrix to map an individual’s activity

limitations and participation restrictions according to 9

141

different domains: sensory experiences, basic learning &

applying knowledge, communication, mobility, self care,

domestic life, interpersonal behaviours, major life areas and

community, social & civic life. (The complete matrix is shown

in Appendix 5. For more background concerning activity

limitations and participation restrictions see Section 4.5.1). For

each of the 43 activities under these 9 domains the degree to

which an individual is capable of carrying out that activity

without assistance (activity limitations) is recorded on a scale

from (0) no difficulty to (4) unable to carry out the activity. In

the same manner the person’s performance in their current

environment (participation restrictions) is also recorded on a

scale from (0) no problem to (4) unable to perform the

activity. By adding up an individual’s responses to each of the

44 items a single activity limitation score and a single

participation restriction score is developed. In addition 9 sub-

scales are constructed by adding the individual items under

each of the 9 domains.

The characteristics of these 13 scales are presented in the

table below.

142

Table 5.34 Characteristics of the severity scales.

Severity scales Maximumpossible score n

maximumscore in study mean

Daily activity help score 11 2823 11 3.1 Service needs score 9 2834 9 4.8 Activity limitations 172 2854 162 28.8 Participation restrictions 172 2853 161 26.1 Sensory experiences 8 2837 8 1.4 Learning & knowledge 20 2807 20 3.4 Communication 16 2754 16 2.3 Mobility 40 2835 40 6.1 Self care 20 2832 20 1.8 Domestic life 20 2832 20 4.1 Interpersonal behaviours 20 2820 20 2.8 Major life areas 12 2764 12 1.7 Community & social life 16 2799 16 2.8

These 13 scales are then assessed by type of disability as

illustrated in Table 5.35 below.

Table 5.35 Mean scores on severity scales by type of disability.

Type of disability

Severity scales sensory physical/

mobility mental/

emotional N 1245 1088 292

Daily activity help score 2.7 3.3 4.0 Service needs score 4.8 4.7 4.8 Activity limitations 22.5 30.8 49.0 Participation restrictions 20.1 27.7 46.5 …/continued

143

Table 5.35 …/continued Type of disability

Severity scales sensory physical/

mobility mental/

emotional N 1248 1092 296

Sensory experiences 2.6 0.4 0.4 Learning & knowledge 3.3 1.9 9.8 Communication 3.2 1.0 3.8 Mobility 1.9 11.7 3.2 Self care 0.8 2.5 4.1 Domestic life 2.7 4.6 8.1 Interpersonal behaviours 2.5 1.8 7.9 Major life areas 1.3 1.4 4.1 Community & social life 1.9 2.8 6.1

Looking first at the score based on assistance required for

daily activities, while it may appear that there is little variation

in mean scores based on type of disability, the observed

differences are in fact not insignif icant (F = 45.3, df = 2/2622,

p < 0.001). In particular, the mean score for mental/emotional

disabilities is significantly higher than for the other types of

disabilities. No significant differences are observed in the score

based on service needs.

Furthermore, the results of an analysis of variance in Table

5.35 shows that both the activity limitation score and the

participation restriction score behave similarly with respect to

type of disability – but they measure two separate aspects of

living with a disability. The activity limitation score is a

measure of an individual’s capacity to carry out everyday

activities without any form of assistance and the participation

restriction score measures an individual’s ability to participate

144

in the same activities in their current environment (home,

work or school). Mean scores for mental/emotional are, on

both scales, significantly higher than scores for all other types

of disabilities (Activity limitations: F = 150.2, df = 2/2650, p <

0.001; Participation restrictions: F = 145.9, df = 2/2649, p <

0.001). Generally speaking this indicates that individuals with

mental/emotional disabilities experience significantly greater

difficulty in performing day to day activities without assistance

and are to a greater extent unable to perform daily activities in

their current environment. In other words they experience

more barriers to full participation in society than do those with

either sensory or physical impairments.

It is interesting to note that participation restriction scores are

lower than activity limitation scores. This is an indication that a

person’s capacity to perform activities in general – without

assistance – (i.e. their activity limitations) is more severe than

their actual performance (participation restrictions). This is

perhaps as might be expected, and is a reflection that many

people with disabilities will have had at least some opportunity

to adapt to their environments through for example the

assistance of others or the use of different forms of assistive

technology.

(The 9 individual domains of the activity limitation scale are

presented in the table for information and will not be further

commented on here.)

145

A breakdown of the comparison by gender and region is

presented in Table 5.36. Gender analyses revealed no

significantly different scores on any of the scales examined.

Activity limitation and participation restriction scores were

similar for both sexes. This finding of no gender association is

important because these scores are not meant to differentiate

between genders – but to classify according to ability to carry

out or perform activities under different circumstances and

irrespective of gender.

Table 5.36 Mean scores on severity scales by gender.

Gender

Male Female

Severity scales: n=1585 n=1194 p value

daily activity help score 3.1 3.0 NS

service needs score 4.9 4.7 NS

activity limitations 29.0 28.5 NS

participation restrictions 26.4 25.9 NS

Turning to region, there are some interesting patterns and

differences that are worth highlighting. For example, Lusaka

province has some of the lowest scores for all measures. This

may indicate that services are more prevalent, that the urban

centre is more accessible to individuals with disabilities and

they thereby experience fewer activity limitations and

participation restrictions. Higher scores are reported for

146

Luapula and Copperbelt provinces on measures of activity

limitations and participation restrictions, while Northern and

Southern provinces report highest scores on the measure of

need for services.

Table 5.37 Mean scores on severity scales by region.

N daily

activity

help score

service

needs

score

Activity

limitations

Participation

restrictions

Copperbelt 387 3.0 2.6 31.5 31.9

Central 334 3.5 5.5 30.8 24.4

Eastern 356 3.3 5.6 28.4 25.2

Lusaka 330 2.3 4.5 19.4 19.2

Northern 123 2.6 7.1 24.3 22.1

Luapula 279 3.9 4.3 38.9 35.0

N. Western 323 3.0 3.6 26.2 22.2

Western 333 2.9 5.3 28.3 24.3

Southern 389 3.0 6.0 29.4 28.5

p-value < 0.001 < 0.001 < 0.001 < 0.001

In order for these particular findings to be more meaningful or

to be able to draw conclusions that reflect regional differences,

an in-depth analysis based on regional characteristics

(similarities and differences) would be required. Unfortunately,

147

we are unable to present that type of analysis at this time and

that type of breakdown will be the subject of later publications.

Respondents were asked to respond to a few questions about

their general health and well-being. They were asked:

How would you describe your general physical health (things like: sickness, illness, injury, disease etc.) on a scale from 1 (poor) to 4 (very good)?

How would you describe your general mental health (things like: anxiety, depression, fear, fatigue, tiredness, hopelessness etc.) on a scale from 1 (poor) to 4 (very good)?

Responses to these two questions were also assessed with

respect to the four disability severity scales in the table below.

We find that, apart from the service needs scale, there is a

clear and significant association between self-evaluated

physical and mental health and the other measures of

disability severity: the better the health of an individual the

lower the score. In other words, and not unexpectedly,

physical and mental health and disability are correlated. Those

who experience poor physical or mental health also experience

higher levels of need for assistance in carrying out daily

activities as well as more activity limitations and participation

restrictions.

With respect to the need for services, high scores are found

among those having both good and poor physical health. While

148

the association was found to be statistically significant, it is

more difficult to explain and may be a reflection of the need

for services being to a greater degree associated with more

extreme health conditions.

149

Table 5.38 Mean scores on severity scales by Self-evaluation of Physical and Mental Health

Physical health poor Not very good

good Very good

n=255 n=801 n=1131 n=630 Severity scales: mean mean mean Mean F statistic p value Daily activity help score 4.3 3.1 3.1 2.5 33.7 <0.001 Service needs score 4.9 4.3 5.0 5.0 12.9 <0.001 Activity limitations 39.9 31.0 27.7 23.8 27.7 <0.001 Participation restrictions 36.7 28.3 25.8 20.1 29.5 <0.001

Mental health poor Not very good

good Very good

n=172 n=476 n=1301 n=857 Severity scales: mean mean mean Mean F statistic p value Daily activity help score 4.4 3.7 3.1 2.3 55.9 <0.001 Service needs score 5.2 4.7 5.0 4.4 7.6 <0.001 Activity limitations 60.7 38.3 25.6 22.2 161.5 <0.001 Participation restrictions 55.4 35.1 24.1 18.7 141.7 <0.001

150

Four of the severity scores were then assessed with respect to

certain indicators of living conditions. We looked first at school

attendance (re-coded: NO = never attended, and YES =

currently attending/left school). Mean scores based on

assistance required for daily activities, activity limitation and

participation restriction, showed that those who never had

attended school scored higher (needed more help, and

experienced greater activity limitations and restrictions to full

participation in society). The difference in mean service needs

score was not significantly different for the two groups.

We then addressed work situation for those 15 years of age or

higher (re-coded: not currently employed, currently

employed). Looking f irst at the mean scores based on

assistance required for daily activities, we found that those

currently employed scored significantly lower than the

unemployed. This may be interpreted as those who are able to

work need less help in their daily activities; or alternatively,

that those who need more help are less able to acquire a job.

Recall that while we did not find any specific gender

dependency when looking at the elements in this scale (see

Table 5.36), many of the items can be identified with a

particular group or gender. The service needs score on the

other hand is more independent (both with respect to gender

(above) and social state and this is reflected in the similarity

among the groups based on work situation.

151

The scores based on activity limitations and participation

restrictions again showed similar patterns. Both showed that

those who are currently employed scored lowest: this again

can be seen as a validation of the two scores in that the ability

to work represents a situation of less activity limitation and

greater social participation. The group defined as not currently

employed score highest on both scales; perhaps a reflection of

the barriers they face in general.

Interestingly, mean scores based on needs for services were

very similar between both the groups assessed, based on

school attendance and employment. This finding may be

explained by the simple fact that, despite their more active

social participation through either education or employment,

they meet different obstacles and have different requirements

for services than those who are not similarly active.

We see here that certain indicators of living conditions seem to

be associated with these measures of disability severity, in

particular activity limitations and participation restrictions.

152 Table 5.39 Mean severity scores on severity scales by indicators of living conditions.

School attendance

(age >= 5)

never attended currently attending or finished school

n = 578 n = 1844 Severity scales: mean mean t statistic p value Daily activity help score 3.4 2.7 6.1 <0.001 Service needs score 4.6 4.8 -1.5 NS Activity limitations 41.1 25.1 11.7 <0.001 Participation restrictions 38.8 22.3 12.1 <0.001

Work situation (age >= 15) Not Currently employed

Currently employed

n=1168 n=738 Severity scales: mean Mean t statistic p value Daily activity help score 3.0 1.9 12.0 <0.001 Service needs score 4.7 4.7 0.2 NS Activity limitations 34.5 19.5 14.6 <0.001 Participation restrictions 31.4 17.6 13.5 <0.001

153

TOWARDS A REVISED UNDERSTANDING OF DISABILITY

By altering society’s notion of disability – from the concept of

physical impairment to one based on activities and

participation – it is hoped to shift also the focus of demands

set by society while at the same time empowering people with

disabilities. Research on living conditions among people with

disabilities must ultimately be directed towards the integration,

participation and enfranchisement of people with disabilities

into society.

Social movements associated with changes in paradigms can

influence research, and visa versa, as is evident in the table

below whereby the increased emphasis on the role of the

environment (both physical and social) has affects on the

subject matter under study – in this case persons with

disabilities.

154

Table 5.40 Contrasting disability paradigms for research

Characteristic Old paradigm New paradigm

Definition of disability

An individual is limited by his or her impairment.

An individual with an impairment requires an accommodation to perform functions required to carry out life activities

Strategy to address disability

Fix the individual, correct the deficit

Remove the barriers, create access through accommodation and universal design, promote wellness and health

Method to address disability

Provision of medical, psychological, or vocational rehabilitation services

Provision of supporters (e.g. assistive technology, personal assistance services, job coach)

Source of intervention

Professionals, clinicians, and other rehabilitation service providers

Peers, mainstream service providers, consumer information services

Entitlements Eligibility for benefits based on severity of impairment

Eligibility of accommodation seen as a civil right

Role of people with disabilities

Object of intervention, patient, beneficiary, research subject

Consumer or customer, empowered peer, research participant, decision maker

Domain of disability

A medical “problem” involving accessibility, accommodations and equity

A socio-environmental issue

Source: Brown 2001 : derived from DeJong and O’Day (1999)

Several of these paradigm ‘shifts’ have been realised through

the research we have conducted in Zambia. Most notably

155

perhaps the definition of disability used in the survey and the

role of people with disabilities in the research process, where

half of the supervisors and research assistants employed were

people with disabilities.

As mentioned previously (see in particular Chapter 3),

international standards are important for setting guidelines

and establishing routines as much as for quantifying

differences among nations, cultures and societies. But, at the

same time, it is important not to become too restricted by

these same international standards. A certain degree of

flexibility must be allowed to be incorporated into these

constructs. We are ultimately left with the following challenge:

to acknowledge and integrate cultural anomalies and

differences when making and interpreting international

comparisons.

From the data analysis perspective, the research challenge, we

believe, lies in a shift in the dependent variable from a

dichotomous outcome measure (disabled, not disabled) to a

continuous measure of activity limitation/participation

restriction – mirroring the range of disability we see in society.

The figure below presents such a scenario. A relatively small

sub-sample of those in our sample who were identified as NOT

having a disability (107 individuals) was asked to complete the

activities and participation matrix. Their responses are

illustrated in the figure below.

156

0

20

40

60

80

100

120

140

160

180

1 5 9 13 17 21 25 29 33 37 41 45 49 53 57 61 65 69 73 77 82 86 90 94 98 102 108 112 119 126 143 161

Num

ber d

isab

led

0

2

4

6

8

10

12

14

16

18

20

Num

ber N

on-d

isab

led

DisabledNon-disabled

Figure 5.2 Activity limitations among people with and without disabilities

157

Similar results were seen when participation restrictions were

analysed, however, for reasons of simplicity, only the activity

limitation graph is presented here.

The above figure clearly indicates that there is an overlap; that

is, even people without disabilities live with certain limitations

in their daily life activities and restrictions in their ability to

participate in all levels of social interaction and some people

with disabilities are able to function in society with little or no

problem. While only 9% of those with disabilities scored 4 or

less on the activity limitation score compared to 24% of those

without disabilities, it is important to stress that some of those

people identified with disabilities are functioning well in

society. Using the same reasoning we found that 75% of those

individuals who were identified as not having a disability

experienced at least a little problem in their capability to

perform certain daily life activities.

Also the range of scores on both activity limitations and

participation restrictions reflects the diversity of disability in

society – and clearly indicates that being disabled is not a

singular, two-dimensional phenomenon but rather a complex

process that deserves to be understood as part of the human

condition and not as something that represents a deviation

from the norm.

158

158

Finally, these measures of activity limitations and participation

restrictions must be interpreted as relevant to the

environment, society and culture from which they are derived.

This will require an expanded view of disability data and effect

substantially greater measurement challenges. We have in this

research attempted to meet these challenges through the

development of a matrix, based on the concepts inherent in

the ICF and have thus taken a step in the direction of a new

paradigm, defining a new concept. Disability research can no

longer afford to be restricted to counting impairments,

handicaps or even people with disabilities – but using a better

definition to identify a population based on activity limitations

and participation restrictions and ensure that they are

enfranchised.

159

6 Discussion

(AH Eide)

A nationwide representative study on living conditions among

people with activity limitations has been carried out in Zambia

in 2005 – 2006. This report provides some of the most

important results from the study. Partners ZAFOD, INESOR,

CSO and SINTEF Health Research have thus established an

important basis for promoting better living conditions for

people with disabilities in Zambia. The study offers an

opportunity for both monitoring the situation over time and

assessing the impact of policies through later studies.

Furthermore, a unique database has been created allowing for

the comparison of living conditions between people with and

without disabilities and between households with and without

disabled family members. The study also adds to a growing

body of information on living conditions among people with

disabilities currently being collected in the southern African

region. In the future, with data from Namibia (2003),

Zimbabwe (2003), Malawi (2004), Zambia, Mozambique

(2008) and possibly other SADCC member countries there will

be possibilities not only for making national or regional

comparisons but to share experiences and build capacity in the

region to improve living conditions in general and specifically

among people with disabilities.

160

A particular feature of the study is the inclusion of a control

sample of households and individuals without disabilities. Few

in-depth studies of living standards focussing on disabilities

have been carried out in Zambia. In addition to addressing the

situation of people with disabilities, this study also provides a

unique set of data on living conditions that may be useful for

monitoring the general standard of living in the country.

Conceptually and operationally based on ICF, the study also

offers an opportunity to develop a new generation of disability

statistics. With ICF, a foundation is established upon which

health, functional limitations, personal and environmental

factors may be studied together. This provides an opportunity

also to move beyond the dominating descriptive disability

statistics and to analyse relationships and factors which

contribute to exclusion of individuals with disabilities from

social participation.

Socio-demographic differences between the two types of

households (those with and without disabled family members)

were similar among the four studies that have so far been

completed (Namibia, Zimbabwe, Malawi and Zambia).

Households with disabled members are larger and mean age of

family members is higher. Dependency ratio was also shown to

be higher among households with disabled members, reflecting

primarily a higher number of children in these families (mean

number of children 2.6 and 2.2, p < .001).

161

A particular demographic difference was found in that a clearly

higher proportion of men were found to be disabled compared

to their female counterparts. This is in line with the previous

studies in the region, but this gender difference was

demonstrated to be significantly higher in the Zambian sample

as compared to the previous three studies. Furthermore,

individuals with disabilities are younger than those without

disabilities. All in all, these household differences may be the

result of certain strategies in the households to cope with the

situations they encounter. As there are few, if any, services to

support families and individuals with disabilities living at

home; practical, economic and other problems will have to be

solved within the household itself. Further studies are however

necessary to reveal coping mechanisms at the household level.

It is a main finding that households with disabled members

and individuals with disabilities score lower on a number of

indicators of level of living conditions as compared to

households without disabled members or non-disabled

individuals. Largely, the observed differences in levels of living

conditions in the data material from Zambia substantiate the

pattern that was first observed in the Namibian, Zimbabwean

and Malawian studies.

The disability component of the survey revealed a relatively

even distribution of people with disabilities across age

categories. This is very similar to the pattern in Namibia,

162

Zimbabwe and Malawi, but deviates from the situation in more

developed countries where age is closely and positively

associated with disability. This could be due entirely to the

particular age profile in Zambia with large proportion of the

population being 20 years or less. Bearing in mind however

that onset of disability for many of those surveyed is early in

life, and that the causes of disability to a large extent are

congenital or illness related, the results presented here

demonstrates a different “causal profile” than in high-income

countries. This should have bearings also on service

development, rehabilitation, as well as preventive measures.

By using the disability screening procedure proposed by the

Washington Group on Disability Statistics, it was anticipated

that we would be able to identify a larger population of people

with disabilities than what would be possible through the

application of the more traditional, impairment based

screening procedures. It appears from the prevalence data

presented here that this approach has succeeded. It has been

shown that by focussing on difficulties in carrying out certain

activities (seeing, hearing, walking, remembering, self-care &

communicating) rather than measuring impairments, the

screening instrument was able to capture 13.3% of the

population as having one or more activity limitation compared

to 2.7% using a modified ICF approach in the 2000 census and

0.9% using an impairment based approach in the 1990

census.

163

While the age profile in the Zambian population contributes

significantly to explain the prevalence distribution among the

population, there are however several other possible reasons

for the classical differences observed in disability prevalence

between low- and high-income countries. The information

gathered through the type of survey described here is self-

reported, and it is not unlikely that responses are influenced

by the prevailing understanding of disability and activity

limitations and that functional problems related to “normal”

ageing are more often not included in most peoples’

conception of disability. In addition to problems with

comprehension of the new conceptual framework, traditional

beliefs concerning disability, generally higher mortality rates

among the population, a more family-oriented, inclusive

society, and lower level of social complexity (i.e. a less techno-

dependent social structure), are all possible explanations for

the marked difference in prevalence. Most researchers in the

field will however underline measurement procedures as the

most important, and the study in Zambia, together with the

other corresponding studies in the Region, may be seen as

part of a process towards more sensitive measures on

disability and activity limitations (Eide & Loeb 2006).

The age profile in the data material as well as the information

about causes of disability imply that disabilities that are to a

large extent prevented in more developed countries (through

peri-natal and neo-natal health services) are not prevented in

Zambia, at least not to the same extent. This should be seen

164

as a serious challenge to the health services in the country,

and in less developed countries generally.

It was found that need for emotional support surpassed

economic support when asking for what type of assistance that

was needed in daily life. This is important to bear in mind

when developing services for people with disabilities, as

emotional needs will more readily be neglected when the focus

of service delivery is generally in terms of practical help and

economic and material needs. Developing mental health

support programs at the local community level is very relevant

in this regard.

With respect to the role of the person with a disability in the

household, results indicate certain problems of social exclusion

which should also be taken seriously. Among these problems

the most pronounced concern is not taking part in one’s own

traditional ceremonies, not making important decisions about

one’s life and the high proportion who are not married and do

not have own children. These, and other indicators of social

exclusion, imply that awareness creation, information and

education directed at the families of individuals with disabilities

is urgently needed.

It appears from the study that services (schools, devices, etc.)

have what may be termed a “physical disability bias” in that

people with sensory and, in particular, intellectual or

165

psychological impairments are worse off on some important

indicators. This information should be of importance in the

planning of future services for people with disabilities in

Zambia.

Large gaps were observed in the provision of several types of

services needed by individuals with disabilities. The largest

gaps were found with regards to vocational training, welfare

services, assistive devices and counselling. These four services

also scored lowest in the Namibian, the Zimbabwean and the

Malawian studies. The figures point directly to important

challenges for service providers to improve services and

accessibility, and not in the least to policy makers to review

priorities in the area of service provision. Health services, on

the other hand, are apparently available to the large majority

of those with disabilities, although 20 % reported that they did

not receive health services when this was needed; this may be

an indication that the problem is both the type or quality of

health service offered, and to some extent also availability.

Of particular note is the proportion of individuals with activity

limitations who, though eligible, did not attend primary school.

It is a situation worthy of attention that around one fourth of

those surveyed never attended school, and the results clearly

indicate that those with disabilities are worse off than those

without. A comparison of language abilities substantiates this

imbalance. The study thus indicates that access to education is

166

restricted for many individuals with disabilities. As mentioned

above, this is particularly a problem for those with sensory and

mental impairments. The analysis of scholastic achievement

(school grade completed) offers some hope to the situation

described above. It is clear that, given the opportunity to

attend school; those individuals with disabilities were able to

match the achievements of those without. This information is

potentially useful information in planning future educational

services.

The level of unemployment in Zambia is high, and even higher

among those with disabilities compared to those without. This

finding corresponds to the results from the previous studies in

the region. It is further suggested that the results presented

here may indicate that having a disabled family member also

affects job opportunities for those non-disabled in a household.

For example, the complexities of supporting a family member

with a disability, in particular the practical obstacles and

solutions a family faces and the responsibilities met in terms of

care and assistance needed by the disabled family member

affect the level of living of the entire household.

The study has documented that the same pattern of

differences between those with and without disabilities is found

among both men and women. It has however also been

demonstrated that women score systematically lower on many

of the important indicators of level of living conditions. There

167

are also socio-demographic gender differences that indicate

the need for a gender perspective on disability policy in the

country.

The research presented in this report offers new insight into

the disablement process in the form of a newly conceived

matrix based on activity limitations and restrictions in social

participation. These constructs offer a broader

conceptualisation of disability, beyond the dated definition

based on physical impairments. By categorizing an individual's

capability to accomplish daily activity tasks without the use of

assistance, and their social participation within these same

activity parameters or domains, in their normal environment,

disability is re-defined according to these broader concepts –

and focus is shifted from impairment to social participation and

inclusion. Through the operationalisation of activity limitations

and restrictions in social participation, new and robust

measures are available and open up for more advanced

analyses. This has been utilised to some extent in this report,

while further analyses will be presented in later publications.

An analysis of activity limitations and participation restrictions

confirms that individuals with mental/emotional impairments

experience activity limitations and restrictions in social

participation to a greater degree than do others. This is a

further indication that there is a need for distinguishing

168

between different types of disability when developing disability

policies or specific measures to address inadequacies.

Matrix-derived scores based on activity limitations and

participation restrictions, together with scores derived from

needs for services and help needed in accomplishing daily

tasks were analysed with respect to two living conditions

indicators – school attendance and work situation.

Results indicated that those who never had attended school or

were unemployed had significantly higher activity limitation

and participation restriction scores (and scored higher on help

needed in daily tasks) than did their counterparts who had

attended, or currently were attending school, or those who

were currently working.

These results confirm the strength of the matrix scores in

differentiating between individuals based on their needs rather

than their limitations.

A further indication or confirmation of the social complexity of

disability is seen in the fact that mean scores based on needs

for services were somewhat lower among the same groups

described above (those who never attended school and

unemployed). This finding points to the importance of

environment in the disablement process: those who are more

active in society, either through employment or education,

meet more obstacles in their expanded environments and thus

169

experience more requirements for services than those whose

activities and participation are restricted.

Even the healthiest in a population will experience some

limitations to their activities or restrictions in their social

participation, and it is of particular interest even among a

small group of individuals identified as not disabled in this

study positive scores indicating some limitations/restrictions

were registered on the activity and participation scales. This

finding is in accordance with a revised perception of disability

(ICF) and thus to the intentions underlying the two scales.

Activity limitations and restrictions in social participation are

constructs that have been liberated from an impairment-based

understanding of disability and should reflect more universal

concepts relevant for the daily life of all individuals in a

population. The study thus contributes to develop a new

paradigm in disability statistics, in one sense contributing to

“mainstreaming” this field of research. This is further discussed

by Eide & Loeb (2006) who argues for the need of both

strategies, i.e. one that allows for contrasting conditions for

people with and without disabilities, and one strategy which

includes the population in general in studies of activity

limitations.

While ICF represents a shift in focus in the conceptualisation of

disability and the disablement process, it is still a classification

of health and health related states in the WHO terminology

170

(ICF 2001). It is not the intention of ICF to detach disability

from health entirely, but rather to include other important

factors into a model which is able to capture some of the

complexity surrounding the phenomenon of disability. It is in

this regard interesting to note the demonstrated relationship

between subjective health and disability.

The analyses of activity limitations among people with and

without impairments contribute to support the idea of

functional problems, operationalised as activity limitations

and/or restrictions in social participation, as a phenomenon

that is generally relevant and not only for those who are

identified or labelled as disabled. This opens up for a new

generation of disability statistics that has the potential for

generating new knowledge about disability and the

disablement process. It is however argued that both viewing

disability as a dichotomy and as a continuous phenomenon is

needed and that it would be problematic to completely

abandon the “traditional” disability statistics due to their

potential for generating comparisons between groups.

Comparative analyses have produced evidence for

discrimination of individuals with disabilities in many high-

income countries and thus represent very important

information for advocacy as well as development of policy and

services.

171

7 Conclusions

(ME Loeb)

This study in Zambia has produced unique data on living

conditions among people with disabilities and a control sample of

people without disabilities. Virtually no other information of this

kind has been produced in, or for, Zambia. This survey thus

represents a first possibility to study different aspects of the lives

of people with disabilities in the country. It also provides a basis

for monitoring the situation in the future. Following similar

studies in Namibia, Zimbabwe and Malawi, the Zambian study is

also an important link in an initiative to establish a Regional

database.

As with the other published studies, the main finding in this study

from Zambia is that there are systematic differences between

those with and without disabilities, and between households with

and without disabled family members. In short, individuals with

disabilities and their households are worse off on many important

indicators of living conditions.

Systematic gender differences were found between households

with and without a disabled family member; a higher proportion

of those with disabilities were men compared to the ‘control’ non-

172

disabled population. While this is in line with the previous studies

in the region, the gender difference in the Zambian sample was

demonstrated to be significantly higher when compared to the

previous three studies. The possible confounding effects of this

gender imbalance were controlled for in the subsequent analyses.

In this study we have furthermore been able to demonstrate that

by dissociating an individual’s physical impairment from their

limitations and ability as measured in terms of parameters of

capacity and performance, the focus of disability can be

redirected towards improving an individual's social situation

through the removal or reduction of barriers that limit activities

and restrict social participation, and thus facilitating their

incorporation as fully active members of society. The application

and operationalisation of certain conceptual components in the

ICF model are seen as among the first steps towards a new

paradigm for defining disability statistics.

To this end, it is hoped that this study and other similar studies

can contribute to highlight systematic discrimination, inform the

public, authorities and the disabled themselves about the

situation, and thus create a consciousness and level of awareness

that is necessary for action. A clear challenge will be to advocate

and instigate for improvements in the living conditions of people

with disabilities in the current context of a low-income country in

Southern Africa.

173

It is recommended that the results from this study be considered,

together with other relevant sources, as a basis for defining the

situation for people with disabilities in Zambia and agreeing upon

a path for the future. Setting priorities, developing policy as well

as specific measures will be necessary in order to achieve

tangible improvements. A database on living conditions such as

the one presented here is, in this regard, a potentially important

tool for organizations of people with disabilities and relevant

authorities. A first important step could be a dialogue between

the Government of Zambia including relevant ministries, ZAFOD

and other DPOs, as well as researchers and other resource

persons, in order to agree on priorities and measures to improve

the situation for individuals with disabilities in Zambia.

174

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9 Appendices

Appendix 1: List of Participants attending pre-study workshop, 10 – 11 March 2005, Lusaka, Zambia

Name* Organization Mr. Felix Simulunga Zambia Federation of the Disabled (ZAFOD) Mr. John Miyato ZAFOD Mr. Simate Simate ZAFOD Mr. Paradious Sakala ZAFOD Mr. John Nyirenda ZAFOD Mr. Raphael Maseko ZAFOD Dr. Mutumba Bull Institute for Economic and Social Research

(INESOR) Ms. Linda Kaombe INESOR Mr Wamulume Mukata INESOR Mr. Mofya Mwila INESOR Ms. Naomi Banda INESOR Mr. Goodson Sinyenga Central Statistical Office (CSO) Dr. Arne H. Eide SINTEF Health Research, Norway Mr. Mitch Loeb SINTEF Health Research, Norway

Mr. M. Mubiana Action on Disability and Development (ADD) Mr. Lango Sinkamba Disability Initiatives Foundation (DIF) Mr. Charles Mbewe Evelyn Hone College Mr. John Mukopola Zambia Association for Children and Adults

with Learning Disabilities (ZACALD) Ms. Barbara Phiri ZACALD Mr James Mung’omba ZACALD Ms. Mbachi Muyobo Zambia Association of Parents for Children

with Disabilities (ZAPCD) Mr. John Kunda Zambia Agency for Persons with Disabilities

(ZAPD) Mr. Mwape Mubanga ZAPD

180

Mr. Festo Mwanza Zambia Information Services (ZIS) Ms. Basila Silunda Zambia National Association of the Deaf

(ZNAD) Mr. John Njovu ZNAD Ms. Serah Bretheton Zambia National Association of Disabled

Women (ZNADWO) Ms. Alice Mbelele ZNADWO Ms. Francesca Muyenga ZNADWO Ms. Edina Chabwela Zambia National Association of the Hearing

Impaired (ZNAHI) Mr. Emmanuel Banda Zambia National Association of the Physically

Handicapped (ZNAPH) Ms. Constance Sachelo ZNAPH Mr. Jonathan Songwe Zambia National Association of the Partially

Sighted (ZNAPS) Mr. Moses Chanda ZNAPS Mr. Nakawa Chiala ZNAPS Mr. Alvin Chiinga Journalist, Daily Mail Ms. Mwamba Mumba Sign Language Interpreter

* We apologise for any names that may have been misspelled or any participants who may have been unintentionally omitted from the above list. The participation and contributions of all those who attended were greatly appreciated.

181

Appendix 2: Summary of Household Screening & Disability Prevalence

Province Population Individuals

screened # PWD* prevalence

Southern 1212124 19155 3266 17.1

Central 1012257 23300 2254 9.7

Lusaka 1391329 12710 1913 15.0

Northern 1258696 6595 1399 21.2

N/Western 583350 7170 1335 18.6

Western 765088 8020 1778 22.2

Luapula 775353 21460 1575 7.3

Eastern 1306173 15940 1729 10.8

Copperbelt 1581221 18460 2475 13.4

Zambia 9885591 132810 17723 13.3

*PWD (people with disabilities): based on the 6 WG screening questions and including those who registered at least somedifficulty on at least two of the 6 domains listed

182

Appendix 3: Sample size determination

1. Starting point is the confidence interval:

CI: P +- Set-95%

Where: CI = Population Confidence interval Se = Standard Error (Simple Random Sampling) t = t-statistic at 95% confidence level (t=1.96 2)

2. Fix the proportion to 50% in order to maximise variance

3. Search for a Design Effect Factor (DEFF) for the key analysis variable (better still for proportion)

4. Fix tolerable Standard Error from 5%

5.

6. (Dots are inner products)

7.

8. Next step is to adjust SRS Sample using appropriate Design Effect (DEFF or DEFT)

9. Desired sample for Complex Survey= nsrs x DEFF

10. Try to vary the margin of error that you can tolerate from 5% to 1% and observe exploding sample

11. In conclusion, the minimum SRS sample for any domain of study is 400 observation units

183

Appendix 4: Data collection teams

PHASE ONE Western Province Organisation Gender Disability Richard Zulu* INESOR M None Charles N. Namukolo ZNAPH M Physically disabled Mupikana Theo INESOR F None Fridah Malupande INESOR F None

Henry Taulo ZACALD M Parent of disabled child

Northern Stephen Mwale* INESOR M Speech Impaired Lango Sinkamba ZAFOD M Physically disabled Moses Chanda ZNAPS M Partially Sighted

Victor Mwale ZACALD M Parent of disabled child

Lillian Chela CSO F None Luapula Mukamulumbu Mweemba* INESOR F None Merlyn Milo INESOR F None Chilufya Chisenga INESOR M None Mutale Kalikeka INESOR F None

Patrick Kashimbo ZACALD M Parent of disabled child

Eastern Justine Bbakali* ADD M Physically disabled

Mbachi Muyobo ZAPCD F Parent of a disabled child

Peggy Banda INESOR F None Yvone Zimba ZNAPH F Physically disabled Aaron Masaninga Tembo INESOR M None North-Western Mwazanji Phiri* INESOR F None James Kapata ZNAPH M Physically disabled Bostone C. Mwenya ZNAPH M Physically disabled Chama Kaunda INESOR M None Mabel Banda CSO F None

184

PHASE TWO Southern Constance Sachelo* ZNAPH F Physically disabled Richard Zulu ZNAPH M None

Henry Taulo ZACALD M Parent of disabled child

Patrick Kashimbo ZACALD M Parent of disabled child

Fridah Malupande INESOR F None Lusaka McKenzie Mbewe* ZNAD M Deaf

Mbachi Muyobo ZAPCD F Parent of disabled child

Moses Chanda ZNAPS M Partially sighted Chama Kaunda INESOR M None Lilian Chela CSO F None Central Mukamulumbu Mweemba* INESOR F None Yvone Zimba ZNAPH F Physically disabled Chilufya Chisenga INESOR M None Charles N. Namukolo ZNAPH M Physically disabled Peggy Banda INESOR F None Copperbelt Josephine Shinaka* ZNADWO F Physically disabled Mutale Kalikeka INESOR F None James Kapata ZNAPH M Physically disabled Bostone C. Mwenya ZNAPH M Physically disabled Mupikana Theo INESOR F None Mwazanji Phiri INESOR F None PRINCIPAL INVESTIGATORS Dr. T.J. Ngulube INESOR M None Dr. C.A. Njovu INESOR M None Mr. G. Sinyenga CSO M None Mr. F. Simulunga ZAFOD M Physically disabled Key: *=Supervisor

185

Appendix 5: Activity and Participation Matrix

ACTIVITY LIMITATIONS: How difficult is it for you to perform this activity without any kind of assistance at all? (That is, without the use of any assistive devices – either technical or personal).

PARTICIPATION RESTRICTIONS: Do you have any difficulty in performing this activity in your current env ironment? (*Current environment refers to the surroundings in which you live, work, and play etc for the majority of your time).

Activity limitation score

(A measure of Capacit y)

0 no dif ficulty 1 mild difficulty 2 moderate difficulty 3 severe dif ficulty 4 unable to carr y out the acti vity

8 not applicable 9 not specified (level not known)

Participation restriction

(A measure of Performance in current environment)

0 no problem 1 mild problem 2 moderate problem 3 severe pr oblem 4 compl ete probl em (unable to perform)

8 not applicable 9 not specified (level not known)

1a. SENSORY EXPERIENCES a. watching/looking/seeing b. listening/hearing

1b. BASIC LEARNING & APPLYING KNOWLEDGE a. learning to read/write/count/calculate

b. acquiring skills (manipulating tools, painting, carving etc.)

c. thinking/concentrating

d. reading/writing/counting/calculating

e. solving problems

2. COMMUNICATION a. understanding others (spoken, written or sign language) b. producing messages (spoken, written or sign language) c. communicating directly with others

d. communicating using dev ices (phone/ty pewriter/computer/SMS)

3. MOBILITY a. stay ing in one body position

b. changing a body position (sitting/standing/bending/ly ing)

c. transferring oneself (moving from one surf ace to another)

d. lifting/carry ing/moving/handling objects

e. f ine hand use (picking up/grasping/manipulating/releasing)

f. hand & arm use (pulling/pushing/reaching/throwing/catching)

g. walking

h. moving around (crawling/climbing/running/jumping)

i. using transportation to mov e around as a passenger

j. driv ing a vehicle (car/boat/bicycle/or riding an animal)

4. SELF CAREa. washing oneself b. care of body parts, teeth, nails and hair c. toileting d. dressing and undressing e. eating and drinking

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Appendix 5: Activity and Participation Matrix (Continued)

Activity limitation Participation restriction

5. DOMESTIC LIFE a. shopping (getting goods and services) b. preparing meals (cooking) c. doing housework (washing/cleaning) d. taking care of personal objects (mending/repairing) e. taking care of others 6. INTERPERSONAL BEHAVIOURS a. making friends and maintaining f riendships b. interacting with persons in authority (officials, village chiefs) c. interacting with strangers d. creating and maintaining family relationships e. making and maintaining intimate relationships 7. MAJOR LIFE AREAS a. going to school and studying (education) b. getting and keeping a job (work & employment) c. handling income and payments (economic life) 8. COMMUNITY, SOCIAL AND CIVIC LIFE a. clubs/organisations (community life) b. recreation/leisure (sports/play/crafts/hobbies/arts/culture) c. religious/spiritual activ ities d. political life and citizenship

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Appendix 6: Inventory of Environmental FactorsBeing an active, productive member of society includes participating in such things as working, going to school, taking care of your home, and being involved with family and friends in social, recreational and civ ic activ ities in the community. Many factors can help or improve a person’s participation in these activ ities while other factors can act as barriers and limit participation. First, please tell me how often each of the following has been a barrier to your own participation in the activ ities that matter to you. Think about the past year, and tell me whether each item on the list below has been a problem daily, weekly, monthly, less than monthly, or never. If the item occurs, then answer the question as to how big a problem the item is with regard to your participation in the activ ities that matter to you. (Note: if a question asks specifically about school or work and you neither work nor attend school, check not applicable)

1. In the past 12 months,

1. always

2. often

3. seasonal

4. seldom

5. never

8. NA

9. Not spec.

2. big problem

1.little problem

how often has the availability/accessibility of transportation been a problem for you?

When this problem occurs has it been a big problem or a little problem?

2. In the past 12 months, how often has the natural environment –

temperature, terrain, climate – made it difficult to do what you want or need to do?

When this problem occurs has it been a big problem or a little problem?

3. In the past 12 months, how often have other aspects of your surroundings –

lighting, noise, crowds, etc – made it difficult to do what you want or need to do?

When this problem occurs has it been a big problem or a little problem?

4. In the past 12 months, how often has the information you wanted or needed

not been available in a format you can use or understand?

When this problem occurs has it been a big problem or a little problem?

5. In the past 12 months, how often has the availability of health care services

and medical care been a problem for you?

When this problem occurs has it been a big problem or a little problem?

6. In the past 12 months, how often did you need someone else’s help in your

home and could not get it easily? When this problem occurs has it been a big problem or a little problem?

7. In the past 12 months, how often did you need someone else’s help at

school or work and could not get it easily?

When this problem occurs has it been a big problem or a little problem?

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8. In the past 12 months,

1. always

2. often

3. seasonal

4. seldom

5. never

8. NA

9. Not spec.

2. big problem

1.little problem

how often have other people’s attitudes toward you been a problem at home?

When this problem occurs has it been a big problem or a little problem?

9. In the past 12 months, how often have other people’s attitudes toward you been a problem at school or work?

When this problem occurs has it been a big problem or a little problem?

10. In the past 12 months, how often did you experience prejudice or discrimination?

When this problem occurs has it been a big problem or a little problem?

11. In the past 12 months, how often did the policies and rules of businesses

and organizations make problems for you?

When this problem occurs has it been a big problem or a little problem?

12. In the past 12 months, how often did government programs and policies

make it difficult to do what you want or need to do?

When this problem occurs has it been a big problem or a little problem?